World IBD events
Improving quality of life for people with IBD
In order to mark World IBD Day 2016 the European Federation of Crohn´s and Ulcerative Colitis Associations (EFCCA) together with its 31 member associations and other IBD sister organisations from around the world are uniting their efforts around the campaign ¨Improving quality of life for people with IBD¨ in order to create greater awareness about inflammatory bowel disease and to pave the way for improvements in the quality of life of people with IBD.
As part of the campaign local and regional authorities worldwide will light up famous landmarks in purple (the colour for World IBD Day) in support of our campaign. Images of these highlighted landmarks/buildings will be shared on this website as well as other international and national social media channels using the hashtag #unitedwestand2016. Many associations around the world will engage in supporting event providing detailed information about IBD and issues addressing the quality of life of people with IBD. More info: email@example.com
Banja Luka: the Bans court building
Mostar: the Old Bridge
Sarajevo: the Academy of Fine Arts
On May 15 the 11th Walk for Crohn's and Colitis will be held in Ibirapuera in São Paulo and other cities in support of IBD Day.
Several Brazilian cities are joining the World IBD Day campaign. Here is the list of the landmarks that will be lit in purple on 19 May:
São Paulo: the Monument to the Bandeiras, the Tea Viaduct, the Mario de Andrade Librar, the Ponte das Bandeiras, the statue of Manuel de Borba Gato and the hospital Alemão Oswaldo Cruz
Salvador de Bahia: the Elevador Lacerda
São José do Rio Preto: the Shopping mall ´Iguatemi¨
Santa Catarina: Cristo Luz in Balneário Camboriu.
Porto Alegre: the Foundation Iberê Camargo
Campo Grande/MS: The Scope clinic
Maringá: the ¨Nossa Senhora da Glória¨ cathedral
Caxias do Sul: Hospital Pompéia
Toronto: the CN Tower and the City Hall Tower
The Cyprus IBD association CYCCA has arranged for the following landmarks to be lit in purple on 19 May.
Limassol: the Town Hall
Nicosia: the Town Hall
Strovolos: the Town Hall
The Danish IBD association, CCF, has arranged for one of Copenhagen´s most emblematic statutes, the Little Mermaid, to be lit in purple on 19 May.
Copenhagen: the Little Mermaid Statue
The Delta IBD Group Egypt is joining World IBD Day for the first time and will be organising an event with patients, nurses and doctors in order to raise awareness about IBD in Egypt. The town square and the Faculty of Medicine of the Mansoura University will be lit in purple.
Our colleagues in Estonia have joined for the first time our World IBD Day celebrations and the following landmarks will be lit in purple on 19 May:
Tallin: the TV Tower
Kose: the Kau Manor
The French IBD association, afa (association françois aupetit) has mobilised many of its regional chapters to join the global campaign on 19 May. The following landmarks will be lit in purple:
Aix en Provence: The Fontaine (fountain) de la Rotonde
Aix les Bains: the Town Hall
Chalons en Champagne: the Town Hall and the Porte de Sainte Croix (Gates of the Holy Cross)
Hénin Beaumont: the Town Hall
Laxou: the Town Hall
Mende: The Town Hall, the theatre and the Cathedral
Millau: the Town Hall
Montpellier: the Three Graces fountain
Nancy: Place Stanislas
Navarre: the Parliament
Pau: the City Hall
Rosny sur Seine: the Town Hall
Valdoie: the Town Hall
Vers Pont du Gard: the Pont du Gard
The Greek IBD association, HELLESC, has arranged for the following landmarks to be lit in purple on 19 May:
Athens: the Kapodistrian University, the Athens Academy and the National Library
Ioannina: the Clock Tower
Karditsa: the Nikolaos Plastiras statue
Kavala: the Town Hall
Larisa: Music School
Patras: the Apollon theatre
Thessaloniki: the Umbrellas at the beachfront
Trikala: the old bridge over Lithaios river
On May 19th a doctor-patient run will be held around Margaret Island in Budapest followed by a communal picknick.
A video showing the Margaret Island fountain lit in purple for the World IBD Day celebrations
Budapest: the Margaret Island fountain
Szeged: the Votive Church
Dublin: the Convention Centre, the Bank of Ireland College Green and the Mansion House
The Israeli IBD association organised for the Israeli Parliament to be lit in purple for World IBD Day.
The Italian IBD association, AMICI, will be joing the World IBD Day campaign with the following landmarks:
Cammarata: the Town Hall
Capaci: the Church
Carpi: the Tower clock
Catania: the Bellini Theatre
Florence: Fountain of Neptune
Modena: The Ghirlandina Tower
Novara: Dome of san Gaudenzio Cathedral
Palermo: the Town Hall
Partanna: the Grifeo Castle
Pisa: the leaning Tower
Perugia: the Fontana Maggiore
Ragusa: San Giorgio Gate
Rome: the Colosseum
San Giovanni Gemini: the New Millenium Monument
Sciacca: Palermo Gate
Turin: the Mole Antonelliana
Mtarfa: the Clock Tower
(photo credits: Reuben Seychell)
The IBD association Crohn´s and Colitis New Zealand has arranged for the following landmarks to be lit in purple on 19 May:
Christchurch: the Airport
Dunedin: the Town Hall, the Toitu Otago Settlers Museum and The Dunedin Club
Hastings: the fountain
New Plymouth: the Clock Tower
Palmerston North: the Clock Tower
South Canterbury: the Tranquillity Sculpture
Wellington: the Michael Fowler Centre and the Carter Fountain, the Hikitia Crane and the Cable Car
The Polish IBD association, J-elita has arranged for the following landmarks to be lit in purple on 19 May:
Białystok: the Town Hall
Gdańsk: Aleja Żołnierzy Wyklętych Bridge
Katowice: the Spodek Arena
Krakow: the Lovers Bridge and the Tauron Arena Stadium
Rzeszów: the Town Hall
Szczecin: the Pazim Tower
Wroclaw: the Stadium
The Portuguese IBD association, APDI, has arranged for the following landmarks to be lit in purple on 19 May:
O'Porto: the Clérigos Tower
Almada: the Cristo Rei statue
On April the 28th Moscow Children's IBD Center hosted a conference dedicated to Life with IBD. The conference was supported by Moscow State Health Department. The conference also saw the opening of an art exhibition with works, made bypatients of the IBD Center. The event was visited and appraised by the famous Russian artist Nikas Safronov.
The Romanian IBD association, ASPIIR, has arranged for the following landmark to be lit in purple on 19 May. The Palace is the second largest administrative building in the world.
Bucharest: the Parliament Palace
On 19 May a national event was held in the Health Commission venue in Bucharest. The meeting was organized in partnership with the Health Commission of Deputies Chamber from the Parliament, and saw the presence of doctors, patients, deputies and journalists.
In Serbia the Fountainn "Fight" of the Kalemegdan fortress in Belgrade will be lit in purple.
The Slovenian IBD association, KVCB, has arranged for the following landmarks to be lit in purple on 19 May:
Postojna: the Brilliant stalagmite
Predjama: the Castle
Some pictures of the World IBD Day celebrations in Slovenia:
Colleagues and friends in South Korea have joined World IBD Day by organising a race in Seoul in order to raise awareness about IBD. Here are some pictures of the event.
In Spain, ACCU España has mobilised many of its local and regional groups to join the global World IBD Day on 19 May.
Cantabria: the Gran Casino del Sardinero
Córdoba: the Cathedral Tower and the Hotel Córdoba Center
Granada: the Town Hall
La Coruña: the Hercules Tower
Las Palmas de Gran Canaria: el Cabildo
Malaga: the Town Hall
Madrid: the Palacio des Cibeles
Merida: The Portico of the Roman Forum
Ourense: the As Burgas
Palma de Mallorca: the Town Hall
Valencia: the Town Hall
Valladolid: the Town Hall and the Milenium Dome
Vitoria - Gasteiz: the Town Hall and Los Arquillos
Guernsey: the Castle Cornet
On 14th May, along the coast of Montevideo, there will be a walk to raise awareness about IBD, and on 19th May talks about plans to set up IBD reference centers will be held.
Montevideo: the iconic sign
The Niagara falls will be lit in purple
Date: leading up to 19 May
This year more than 40 countries across the globe joined together in a unified effort to raise awareness about Crohn’s disease and ulcerative colitis in honor of World IBD Day, held every year on May 19. This year’s efforts centered around a global video campaign encouraging anyone impacted by IBD to share their story in a short video with the unifying theme of “United We Stand.” Worldwide, five million people live with Crohn’s disease and ulcerative colitis.
Go to YouTube playlist of the World IBD Day channel
How to get involved!
The campaign called for anyone affected by Crohn’s disease and ulcerative colitis--patients, caregivers, gastroenterologists, nurses, family and friends to submit a YouTube video sharing their story.
Videos lasted around 20 seconds and included people´s names, city, country and and two sentences about how IBD has impacted their lif. All messages ended with the message “United We Stand in the Fight Against IBD. For social media the hashtag #UnitedWeStand2015 was used. Videos were made public on 19 May 2015 and can be viewed on the World IBD Day website (www.worldibdday.org).
Show the world how IBD has impacted your life! Join others in their daily fight against IBD.
Date: from 8 May onwards
Place: all over the country
Within the framework of World IBD Day the Más Vida foundation organised free events all over Argentina under the title “Early detection of Inflammatory Bowel Disease¨ .
Since 8 May the Foundation Mas Vida had started a press campaign including local radio stations and a high presence the social networks. The different pieces of communication will provide the public with information about the main symptoms and signs of IBD, and people are invited to contact the foundation through its hotline 0800 222 0614 to arrange a visit to either a public or private health center in order to see a specialised gastroenterologist and to do necessary check ups if deemed necessary by the specialist.
The events will take place in the following cities:
Rosario, Santa Fe 11 to 15 May 2015
Mendoza 26 to 27 June 27, 2015
Córdoba, 16 and July 17, 2015
Tucuman, from 17 to September 19, 2015
Más Vida has also published a explanatory video in Spanish about IBD. You can watch it here:
These are our action on social networks:
Caption: There are thousands of reasons and one you would have never imagined
Followed by this text: People with IBD can feel the urge to go to the bathroom between 3-20 times a day. Other symptoms might include: abdominal pain, persistent diarrhoea, blood in the stools. Decide where you want to be. If you have some of these symptoms call us on 0800222 0614 and we feel refer you free of charge to a specialist.
Taboo subject for Youth: IBD
Austria launches first national school project for early diagnosis and tolerance as concerns IBD
Vienna, May 13th, 2015 - more than 40,000 people in Austria are suffering from Crohn’s disease and Ulcerative Colitis, collectively know as inflammatory bowel diseases (IBD. The incidence rate of the disease is very high amongst teenagers and young adults. More than half of young patients visit the pediatric specialist for the first time at the age of 13 to 17. Therefore anamnesis guidelines have been presented to school doctors in order to support early diagnosis of IBD. Furthermore a youth magazine has been published by the society of school doctors in Austria on the occasion of the World IBD Day on May, 19th.
This magazine aims to promote better understanding for IBD and it encourages more tolerance with the slogan “Friends4Friends - don’t laugh but help”.
More info: http://www.oemccv.at/257_DE
Place: Sao Paulo
As in previous years, the Brazilina IBD association, ABCD, organised a walk with friends, family members and people with IBD in order to raise awareness about Crohn´s disease and ulcerative colitis.
For more information visit our Facebook page: https://www.facebook.com/abcd.org.br
Here are some photos from the event:
Date: 31 May
Place: Brussels, Belgium
Running to raise awareness
On the occasion of World IBD Day, EFCCA, organised the participation of the EFCCA purple team at the Brussels half marathon to raise awareness about Crohn´s Disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD) and which affect over 3 million people in Europe alone.
The half marathon took place on 31 May and we gathered a team of around 40 runners under the colours of the purple EFCCA team. “We want to show the world that having a chronic disease does not mean you cannot participate in an active and fulfilling life “ says Martin Kojinkov from the Bulgarian IBD patient association and one of the EFCCA runners from last year´s race.
With this event EFCCA wants to highlight the impact IBD is having on the quality of life of many people in Europe and worldwide. A survey EFCCA conducted recently, illustrates the daily difficulties that people with IBD are facing not only as far as concerns their health but also their social, intimate and economic situations.
If you would like to receive more information please get in touch with Isabella Haaf at firstname.lastname@example.org
Here a video summarizing the impressions of some of the runners:
Date: the week of 19 May
Place:all over the country
The Finnish IBD association Crohn ja Colitis ry will organizes events during the whole week starting on 18 May in order to celebrate World IBD Day. On Monday (18 May) and Tuesda (19 May) therewill be lectures about IBD and nutrition. You will be able to watch Mondays lecture on the following website www.parempaaelamaa.fi.
More info at: http://www.crohnjacolitis.fi/.
Download programme for the week
Date: around 19 May
Place:all over the country
NEW INFO CAMPAIGN: “Who is the champion?”
Around the date of the World IBD Day next 19 May, a large information campaign has been launched by AFA and its partner, ABBVIE. The objective is to raise awareness in supporting patients suffering from IBD and to salute and acknowledge their courage and determination faced with the consequences of their disease, handicapping them as much as thrusting them into the unknown. A radio campaign with soundbites of TV and radio celebrities whose well known voices will emphasis the message, in the press, on bill boards and on the AFA website.The campaign is entitled « They deserve first place! » documenting real life patient accounts of their lives with IBD.
The aim of the campaign is to value and not stigmatize the patients who fight daily to live a better life…to value their «small and big success stories», their enormous efforts, which no one seems to notice. It’s a campaign to illustrate the daily challenges that face people with Crohn’s disease and ulcerative colitis, whether at work, at school, in social life... These IBD patients deserve to be in first place!
An example of one of the three settings: The Scene of a children’s race.
Who is the champion?
In the foreground: the winner reaches the finish line.
In the center: the second child hasn’t yet reached the finish line and finishes his race. We would normally think the champion is the one who gets there first, but in fact, this morning, Nicolas is the real champion!
President – AFA France
«Who is the champion?”
«Nicolas, 9 years old with Crohn’s disease, deserves first place»
«Despite the abdominal pain he suffered from the day before the race, he managed to finish the race.»
Crohn’s disease along with ulcerative colitis are intestinal bowel diseases touching 200 000 people in France, of which 20 000 are children.
Date: 16 May
Place: social media
To celebrate the World IBD Day of the 19th of May 2015, the Hellenic Society of Crohn’s Disease’s and Ulcerative Colitis’ patients (HELLESCC) organised the following events:
From Monday 20th of April 2015, we started our new awareness campaign "Transform the Taboo... Play with us!!!" where we invited, through our webpage and our facebook page, our members, friends and the general public to transform the toilet paper (something so much misunderstood, but absolutely essential in our daily lives) in anything they could imagine and take a selfie photo of themselves or with friends and then post in support to IBD patients to our facebook page!
On Saturday 9th of May 2015 started the Volunteering Blood Donation in order to increase the number of blood sacks in our Society's Blood Bank at the Tzaneio Hospital of Piraeus. Our Society provides with blood any IBD patient whenever needed for surgery and transfusions.
On Tuesday 19th of May 2015:
1. Volunteers visited gastro clinics at hospitals all over Greece and distributed informative leaflets on IBD to patients, patients' families and healthcare professionals.
2. At Thessaloniki (North Greece) gastroenterologist Dr Marios Katsaros gave a speech to patients about "IBD and recent developments".
On Friday 22nd of May 2015 gastroenterologist Dr Haris Tzathas, rheumatologist Dr Antonia Elezoglou and consultant on human behaviour Mrs Vasia Karagiorgou gave (each) a speech to patients about "IBD, it's relation to rheumatic diseases and the role of anxiety and stress in the development of IBD" respectively. The speeches and the question and answer section that followed were broadcasted live via the internet in order to give patients who couldn't come to the venue of the presentation, the ability to watch it and participate actively at the question and answer part of it. To watch the presentations visit http://www.livemedia.gr/crohnhellas-2015 .
On Saturday 23rd May 2015 we organised an open air awareness event at Monastiraki Square in the heart of Athens, where in relation to our facebook campaign "Transform the Taboo... Play with us!!!"we informed passersby about IBD offering them to take a photo with toilet papers that were transformed/decorated from children under the guidance of origami creator Electra Nega, while story teller and writer Kostas Stoforos was creating with them stories about the tolerance we all must show to people with any health issue. To view a video on our open air event visit https://www.youtube.com/watch?v=p869COGjj0k .
Finally, on Monday 25th of May 2015, we invited IBD doctors and IBD patients at the Museum of Cycladic Arts to watch a performance by two actresses under the title "Lost in the Translation" where the gap in the communication between doctors and patients was highlighted in a humoristic and straightforward way. After the act, the specialist on communication Ilias Galinos tried (with his presentation) to bridge the gap and offered valuable advices on how to better communication, to both doctors and patients.
Date: 19 May
Several gastroenterologists from Szeged University organised these photo shoots at 3 different sites in Hungary to represent the Hungarian IBD patients population.
Hungary also joined the #UnitedWeStand2015 video campaign:
Date: 23 May
Place:Florence - Palazzo Vecchio
On the occasion of World IBD Day the Italian IBD association, AMICI, organised a high level conference involving major IBD experts from Italy presenting and discussing different IBD topics: from IBD in paediatrics, to innovative therapies, from maternity to nutrition and sport. We also had two international guest speakers: Pr Claudio Fiocchi and Pr. Alessandro Fichera. EFCCA was presented by Marco EFCCA chairman. Download programme.
For more information:
Date: 19 May
For the first time this year, a group doctors from the Morozov Children's Clinical Hospital in Moscow and patients are joining us from Russia for the World IBD Day celebrations.
And here a video that has been added to the global video campaign.
Date: 16 May
The Slovenian Association of Patients with IBD (SAIBD) is inviting IBD associations across Europe to join them in Slovenia on the night of 15 May to participate in a presentation/lecture about IBD and on the following day during an awareness raising campaign in the city centre of Lubljana. More details and an agenda will be made available shortly.
SAIBD will cover expenses for accommodation for two nights and meals for two national delegates. However they will not be able to cover the travelling costs.For more information please contact: Mateja Saje, president of SAIBD, at email@example.com,
Date: 16 May
The South Korea IBD associations organised an event on 16 May 2015 to join World IBD Day activities around the world. More information at: http://www.kibdo.org
Date: month of May
Place: several activities all over Spain
Badalona (Catalunya), 17 May
ACCU Catalunya (Associació de malalts de Crohn i Colitis Ulcerosa), GETECCU (Grupo Español de Trabajo en Enfermedad de Crohn y Colitis Ulcerosa) and the Societat Catalana de Digestologia (Catalan Digest Society) organized a number of events in Badalona on May 17th in order to celebrate World IBD Day. These events form part of the actions led by ACCU and GETECCU around Spain with the title “We want to improve the quality of life of patients with IBD”.
In Catalunya, we will try to increase visibility, raise awareness in the population and fight for the needs of people with IBD under the slogan "Our challenge is to face IBD". This campaign has been sponsored by the Consell Consultiu de Pacients del Departament de Salut de la Generalitat de Catalunya and the collaboration of the pharmaceutical Company Otsuka.
Our slogan focuses on the needs for the improvement of the quality of life of people with IBD. The slogan has been selected using the guidelines from the following document: "Las 10 claves para mejorar la calidad de vida de los pacientes de EII” (Ten key actions to improve the quality of life of people with IBD) published by GETECCU, Societat Catalana de Digestologia y ACCU Catalunya. http://www.accucatalunya.es/news.aspx?id=191
The event started at 9 AM with a presentation of athletes from the group “Deportistas EII ACCU Catalunya” (IBD Sportsmen ACCU Catalunya) joined by family and friends for the race “XXXVI Cursa Popular Ciutat de Badalona - Cursa del Dimoni 2015” with the aim: to increase awareness about IBD.
At 12PM there was a conference hosted by Municipal Hospital of Badalona on two major topics: travelling with IBD and physical exercise.
During the conference some of the runners from the group DeportistasEII were given a commemorative plaque recognizing their efforts and good work in raising awareness about IBD and also in raising funds for the investigation into IBD.
Algemesí (Valencia), 23 May
On the occasion of World IBD Day, Cristian Ferragud in collaboration with ACCU España and ACCU Valencia is organizing the Second Benefit Race against Crohn´s and Ulcerative Colitis. For more information please follow this link: second benefit race
ACCU España, (16 May)
The special draw of The Cupón in collaboration with The Spanish Blind Association (ONCE). An entity who is working on disabilities that promoting space in the field of Community policies, among many other areas.
Málaga (19 May)
Homage to our founder and the co-founder of EFCCA, Leon Pecasse, who passed away last February. Furthermore, there will be a conference to celebrate World IBD Day which will focus on the disease from the patients point of view.
Santander and Guipuzkoa (23May)
Asturias (17 May)
ACCU Asturias will organize as previous years a race to celebrate the World IBD Day on May 17th.
Zamora and Leon (13 and 25 May)
We will organise information stands about IBD at the following hospitals: Hospital Virgen de la Concha and the University Hospital of León
ACCU Jaen (19 May)
We will organise information stands about IBD in the following Hospitals: City of Jaen, San Agustin de Linares, Alto Guadalquivir Andujar, Ubeda City
Date: 19 May
Place: all over the country
We’re asking people to join us and wear purple on World IBD Day. We are asking friends, family, school and workplace to join in and be powerful in purple to help boost awareness about Crohn’s Disease and Ulcerative Colitis, and raise crucial funds for Crohn’s and Colitis UK. We have fundraising tools in our Purple Pack to help you on your way. We’ll be making your voices are heard on Facebook and Twitter, so join in and share your photos and stories with us using #worldIBDday #PurplePower. Please join our World IBD Day event on Facebook and invite friends and family to join as well.
Landmarks go purple
A number of landmarks across the UK will be turning purple on Tuesday 19th May in support of World IBD Day. If you live nearby, show your support by posting your landmark selfies to Facebook and Twitter using #PurplePower#worldIBDday
- Launch of our new Branding for the charity
Launch of a new resource to help patients and families work in effective partnership with their clinicians
Summary of the UK Wide IBD Audit
Date: 19 May
This year the IBD association, ACCU Uruguay, celebrated World IBD Day by organising a free scientific conference aimed at patients, families, healthcare professionals and the general population.
The conference took place in Montevideo with the following speakers:
Prof. Beatriz Iade , Unit of Inflammatory Bowel Disease, Gastroenterology Clinic UDELAR and Advisory Member of ACCU
¨what is IBD?
Dr. Sergio Huernos Hosp Bonorino Uduaondo Buenos Aires: Biological treatment for ulcerative colitis¨
Chair: Adriana Banquero President of ACCU
More information: firstname.lastname@example.org
Date: 19 May
In addition to the #UnitedWeStand2015 video campaign, the Crohn´s and Colitis Foundation of America will also be hosting a live Twitter chat on the day with trained IBD specialists to answer your questions about Crohn’s and ulcerative colitis. Join the conversation on Twitter using #WorldIBDDayQA.
Date: 14 and 19 May
Place: all over the country
Fundación Mas VidaWithin the framework of World IBD Day, the IBD association, Más Vida, organised a meeting with partners and stakeholders to share its experiences about IBD. They also organised a workshop/discussion group on 23 May in the Flores neighbourhood (Buenos Aires) about common beliefs and perceptions around the limitations (real or imaginative) as concerns IBD. The target group of this workshop were IBD patients from the age of 16 and onwards.
On 19 May, the commemoration of the Worl IBD Day, Fundeccu - the Inflammatory Bowel Disease Support Foundation - based in Neuquén, organized activities and community events to provide education, awareness and outreach, in addition to offering brochures and other educational materials.Moreover, a series of interviews took place at the following radio stations: :FM DEL LAGO FM 102.5 – San Martin de los Andes, Argentina, RADIO TEENS – WAKE UP FM 92,7 -Neuquén, Argentina, SENSATION FM 107.5 -Neuquén, Argentina, RADIOMITRE 104.7 FM RECORD -Neuquén, Argentina, LU 19 AM 690 Radio Comahue- Rio Negro, Argentina. Information about World IBD Day also appeard in the printed press such as local newspapers and Fundecco was invited to talk about the disease at the TV Show Afternoon Mix (Channel 7 Neuquén).
The most important news , was the approval of a new law by the City Council of the city of Neuquén of the Project “CANT WAIT!” presented by Fundeccu-Argentina, which allows easy access to public toilets, priority seating in Public Transport and fast attendance in public office .
For more information about Más Vida
Date: 14 and 19 May
At Crohn´s and Colitis Canada we organised several activities around World IBD Day:
- a webcast titled “Probiotics and Nutritional Supplements for Crohn’s and Colitis”. It was presented by one of Canada’s leading researchers and clinicians, Dr. Mark Silverberg (May 19th 6:30pm est)
- a webcast on May 14th titled “Managing Flares and Complications in Crohn’s and Colitis" with Dr. Jennifer Jones (May 14th 6:30pm est)
Furthermore as a social media push we also provided a Facebook banner (English + French) that supporters can swap their own to show that they support those living with Crohn’s and Colitis.
More information about Crohn´s and Colitis Canada
Date: 23 and 24 May
Place: Limassol and Nicosia
As in previous years, the Cypriot IBD association, CYCCA , organised two conferences, one in Limassol (23 May) and one in Nicosia (24 May) in order to mark World IBD Day. This year we invited gastroenterologists and psychologists presenting their latest work on IBD, additionally we also invited two patient’s mothers, who shared their personal experience of taking care of children with IBD.
This year CYCCA has also organized a student competition aimed to raise the awareness with the school community about the problems related to IBD and about the challenges faced by patients not only due to the nature of IBD but also to the cleanliness of public and other toilets. The award ceremony took place on May 18th. Furthermore, CYCCA organised a theater performance for children on May 11th.
For more information: http://www.cycca.org/
Date: 24 May
Place: Prague, Ladronka park
The planned event aimed to give the general public knowledge about our problems and needs. This happening was attended by IBD patients, doctors, nurses, journalists and the general public.
Activies that took place included the collection of toilet paper rolls as a symbol of disease severity, the announcement of the best IBD nurse in the Czech republic as well as competitions and accompanying programs.
More information: http://www.crohn.cz/
Date: 18 May till October 2014
Raising awareness and increasing knowledge about IBD
This year EFCCA undertook two actions to mark World IBD DAY:
Running to raise awareness
On 18 May 2014, just a day before the official World IBD Day date, a team of committed EFCCA runners from 9 European countries participated in the 20 km half marathon race in Brussels. The aim was to raise awareness on the issue of IBD which affect around 3 million people in Europe alone and which is increasing particular amongst young people. At the highly publicised event we wanted to show that having IBD does not need to stop you from participating in an active and fulfilling life. Big thanks to our runners that have shown great commitment and a spirit of solidarity.
Watch video of the race:
Watch interviews with some of the runners:
The IMPACT survey was a joint project of EFCCA and its national member associations. It was launched in November 2010 and closed in August 2011. IMPACT II is now on-going in several other countries in and outside Europe. The main aim of the survey was to obtain an international perspective of the impact of Inflammatory Bowel Disease (IBD) on patients’ lives. 4,670 online responses that had been received by the close of the survey were included in the analysis.
The survey has received wide recognition from the scientific community and its poster presentation at the ECCO Congress in 2012 was awarded a „poster of distinction ribbon”. It was also recently published in the Journal of Crohn ́s and Colitis.
For more information please contact Isabella Haaf at email@example.com
Date: 24 May
As part of World IBD Day, the French IBD association, AFA, organized on 24th of May, under the patronage of the President of the Republic and the Ministry of Health and Social Affairs, the second edition of the “Etats Généraux des Malades de MICI” event.
People with IBD, their relatives and all engaged stakeholders in IBD presented the report of five working years which aims for a better management of patients and recognition of Crohn’s disease and the ulcerative colitis.
Furthermore, a panel of citizens made up of people with IBD, relatives and doctors presented 20 strategic pleas for 2020. On Saturday the 24th of May, those 20 strategic pleas were explained to the assembly. More information about this event: http://egmm2014.fr/
More information about afa
Date: month of May
Place: all over Greece
The Attica's Society of Crohn's Disease's and Ulcerative Colitis's Patients (ASCC) organised the following events for World IBD Day 2014:
- We aired a tv spot on National TV Channels from 10th of May until 9th of June 2014.
- On 16 May, a presentation from a psychology specialist on dealing with stress in order to avoid flare ups.
- On 19 May we distributed information leaflets on IBD at major Hospitals in Athens and Pireas (main areas of the Attica Region).
- From 19 May til 23 May we distributed our WIBD Campaign Leaflet to various metro stations all over Attica and of course to various news sites. Our campaign took advantage of the municipal, regional and euro elections and we were DEMANDING FUNCTIONAL AND CLEAN PUBLIC TOILETS!
Date: 17 May
The Italian IBD association, AMICI, organised a big IBD awareness raising and information event which took place in Torino on 17 May. Issues that were discussed included latest treatment options, quality of life, information about nutrition for IBD patients (both adults and children) amongst others. For more information please check out our programme.
Member of the European Parliament, Sergio Cofferati who strongly supports our fight against IBD spoke at the event as well as Paola Pisanti from the Italian Ministry of Health and many other distinguished stakeholders.
Date: month of May
Place: all over the country
In Israel World IBD Day provides us at CCFI with a good opportunity to strengthen the IBD community and raise awareness for IBD on a national level. We are extended our activities to a month long series of events:
Discussion with the Minister of Health - the main event was an open and widely publicized discussion with the Minister of Health on three topics that concern the IBD community in Israel: First, the issue of regulating Biosimilars: CCFI’s stand is that Biosimilars need further clinical trials to prove safety and efficacy in IBD. Second, reducing exposure of CT radiation and transitioning to diagnosis via magnetic imaging, especially with children. Lastly, strengthening IBD centers of excellence and providing the general public and the periphery access to them.
National IBD Patient Event at the Eretz Israel Museum in Tel Aviv is an event which gathered and strengthened the IBD community and our members’ constituency. The new chairman of - Israel Gastroenterology Association (IGA), Prof. Arber spoke at the event. Additional lectures were about new medical technologies, IBD and sexuality and coaching methods for coping with disease. The coaching session was led by Israel’s ‘celebrity’ coach.
Consortium session with IBD specialists - this project is a first time joint event for WID, organized by CCFI with the IBD society within the Israel Gastroenterology Association. CCFI aimed to provide access for patients with especially complex cases, to an unprecedented ad hoc consortium of the best skilled IBD specialist in the country, who volunteered their time for this event. Through this action we also raised awareness for the need of a second opinion and for the importantance of receiving treatment from a Gastroenterologist who is an IBD specialist. We hope this event will be the first in a ‘tradition’ developed especially for World IBD Day.
Raising awareness media campaign via National TV infomercials - a one minute infomercial on symptoms run on Israel’s main three TV channels starting on May 18th. The production of the infomercial was donated to CCFI by the Yoram Bar Advertising agency and the Israeli Television Authority has donated the air time. Our goal is to raise awareness on symptoms for people who suffer from warning signs identified with IBD, but have yet to be diagnosed, and for the general public. We hope that year after year, more and more people will become aware of the existence of Inflammatory Bowl Diseases and their symptoms.
The Children Empowerment Event was a unique two day experience at the "Nitzana Educational Community" in the Negev Desert. This is a joint event of the Shaare-Zedek Pediatric Gastroenterology Unit, and CCFI. Nitzana is situated in the Western part of the Negev desert. The educational community is a special place where children’s self empowerment, a love for the desert, the importance of sustainability, ecology and conservation are stressed. Our children enjoyed desert sports challenges and educational experiences on settlement in desert conditions, ecology, water conservation, solar energy and agriculture. Meanwhile, parents had an opportunity to discuss issues in open sessions with IBD specialists from the medical center. The event was at no cost to the parents or the children. Every child attending the event received a copy of the ‘Crohliti’ board game which was ‘unveiled’ in our EFCCA Annual meeting in Graz.
We would like to thank our dynamic General Manger, Ms. Silvi Omer and the many volunteers, donors, supporters, staff and board members that helped materialize ambitious plans and services for the benefit of the estimated 30,000 IBD patients in Israel.
More information at http://www.ibd.org.il/
Place: all over the country
Crohn’s & Colitis NZ, along with our twelve support groups nationwide were proud to be helping raise awareness and increase knowledge of Inflammatory Bowel Disease with a focus this year on ‘Wellbeing’.
To mark World IBD Day support groups across the country hosted public meetings, a welcome opportunity for those dealing with Inflammatory bowel disease to come, learn and gain a better understanding in the treatment of these chronic diseases. These meetings provided a chance to ask questions, build a network of support and listen to guest speakers including Gastroenterologists, IBD Nurses, Dietician’s, and other IBD patients sharing their personal experiences.
In addition we celebrated this occasion by launching our online submissions for the first New Zealand based camp for children and teenagers with IBD to be held in early 2015. This event has been made possible , thanks to money granted and donated as a result of the 2014 Ports of Auckland Fun Run held in March. Such generosity of spirit will ensure that young people with IBD in New Zealand will be given the opportunity to build confidence, independence, self-esteem and resilience and develop mutual support networks with their peers from around the country.
As we continue to support, advocate for and empower people affected by Inflammatory Bowel Disease, we acknowledge with gratitude the hard work and dedication of our many volunteers, donors and supports who stand by our side in the fight against IBD.
For more information about our upcoming events for this year, we invite you to visit our website at www.crohnsandcolitis.org.nz.
Date: 19-21 May
Place: Warszawa and Krakow
In 2014 for the fourth time the Polish Association Supporting People with IBD celebrated World IBD Day and organised events in two large university centers in Poland - in Warszawa and Kraków. In both cities there were large familiy picnics. Whilst kids were having fun during music and painting workshops, adults took part in IBD related lectures. We also gotmedia patronage of local TV, newspaper and medical portals in order to raise awareness about IBD.
Please take a look at our posters:
Date: 19-21 May
The Romanian IBD patient association, ASPIIR, participated for the first time in World IBD Day. It organised a series of events during three days, starting from 19 of May, in order to raise awareness about IBD in Romania. These activities included a theater performance, a conciert, a giant intestine exibit in Bucharest's central park where people could walk through and experience the "inside" of IBD. We also organised a press conference involving well known gastroenterologists from the Fundeni Hospital.
Finally, we are also pleased that a member of our association went to Brussels to run as part of the EFCCA team at the half marathon. Well done to Christian and congratulations for making the race and bringing us back a medal!!!
Please follow these links to see how our media reported on our activities (in Romanian only):
Our colleague, Christian, during the Brussls 20km marathon:
Date: 19 May
***** due to the floods in Serbia, Croatia and Bosnia, the activities around World IBD Day had to be suspended. Our colleagues in Belgrade are fine but many of the neighbouring towns are devastated. If you would like to support people in Serbia, Croatia or Bosnia please visit the following website: www.helpserbia.com*****
For World IBD Day, UKUKS - the Serbian Association for Crohn's and Colliti, in collaboration with some local sponsors, is organizing a big press conference to raise more awareness about IBD. We hope this conference is going to attract a good number of journalists and we will profit from some of the contacts made during the Join the Fight press conferences.
Another event that we are planning to organise in order to inform about IBD amongst the general public is a a performance by some local actors downtown Belgrade in the hghly visited pedestrian zone. UKUKS will have an information stand and give out printed materials about IBD. More info: http://www.ukuks.org/
Date: 17 May
Place: Rogaska Slatina
The Slovenian IBD association, KVCB, organised a meeting for its members to present two studies on IBD one of which was supported and sponsored by the IBD association. Both studies look at the field of IBD in children and adults in Slovenia as well as the knowledge of IBD epidemiology amongst general health practitioners.
The meeting coincided with the tenth anniversary of the KVCB association and included representatives from the neighbouring country associations.
More information (in Slovenian): http://www.kvcb.si/index.php/nacionalno/1039-17-5-2014
Date: month of May
Place: throughout the country
In Spain there were several activities taking place to mark World IBD Day.
ACCU España y GETECCU held a Press Conference on May 13th to call for more IBD focused units at hospitals as well as to call for improvements in the quality of life of patients with IBD.
Activities from our regional partners
In order to inform about IBD, ACCU Granada had an information booth located at the Hospital Universitario Virgen de las Nieves in Granada on May 13th from 9:30 to 13:30 , and at the Hospital Universitario San Cecilio de Granada from 9:30 to 13:30 on May 19th. More info available in Spanish at the following links:
ACCU Asturias organised a march to celebrate the World IBD Day on Sunday May 18th at 11 AM. The beginning of the itinerary was at Feria de Muestras de Gijón and ended by the Universidad Laboral. Those with enough strength to continue made it back to the parking lot at the Rastro. To join our march you can contact ACCU Asturias (tf: 985 091 237 - email: firstname.lastname@example.org). A T-shirt will be given to all participants for free.
On May 29th, ACCU Cantabria organised a conference to celebrate World IBD Day which focused on paediatric IBD and adhesion to treatment. Patients had the chance to share their knowledge about IBD. The conference was hosted at the Centro de Acción Social y Cultural (CASYC) - C/ Tatín 25, from 17 to 19:15 PM.
#Imagina EII is a campaign to raise the awareness on social networks about IBD targeting the Spanish community, organized by “ACCU Madrid” and “Fundación Más Vida” (Argentina) with help from ACCU ESPAÑA and GETECCU. We are trying people to imagine how life with IBD is.
On May 18th #ImaginaEII campaing will be at Malls: “La Vaguada” and “Principe Pío” in Madrid from 11:00 to21:30
"How many times did you think about what is going on in your guts?"
" How many times did you feel embarrassed for going to the toilet?"
" How many times did you feel guilty when you cannot do what you want with friends?"
" How many times did you have to explain how you feel and your problems?"
Many people do not know how life with IBD is. They might know that they are both pathologies from the intestinal tract; called Crohn´´ Disease and Ulcerative Colitis but probably they do not know how these diseases can change life of patients that suffer from them. The aim of #imaginaEII campaign is to transfer this information from patients to the public.
To celebrate the World IBD Day on May 19th, we will disseminate for the whole month these messages below from patients on the social networks and for this purpose your collaboration is essential.
You can participate as follow :
Sharing images on the social networks:
You can post them on your “wall” on Facebook, Twitter, Instagram, WhatsApp…
Making messages #imaginaEII
Invite your contacts to imagine being in your position and finish writing the phrase with #imaginaEII. Ex: “Imagine to be with gastroenteritis for weeks and weeks #imaginaEII”
Personalize your profile with #imaginaEII
Take one poster or make one
Take a picture with a poster (and with Friends, family, pet,…)
Use it as a picture profile
On May, there will be thousands of activities around the world to share the experience of living with IBD and help people suffering it. Join the cause!!!
ACCU Catalunya is organising two events:
We will celebrate the World IBD Day on Sunday 18th in Sabadell with the slogan: "No puc esperar (I can’t wait)! – Improving patient’s quality of life”. We want to show how life with IBD is and we will talk about the disease, patient needs and about the project "No puc esperar! We count on you, your family and friends. United we stand! We are looking forward to meet you at Casal Pere Quart from 11.15AM and at Plaça Doctor Robert at 12.15 on May 18th.
World IBD activities are organized by GETECCU (Grupo Español de Trabajo en Enfermedad de Crohn y Colitis Ulcerosa) and ACCU Catalunya (Associació de malalts de Crohn i Colitis Ulcerosa), with funding from the Departament of Health of the Generalitat de Catalunya, the city council of Sabadell, tha Catalan Society of Digestions, the Advisory Board of Patients of the Catalan Health Department and with the colaboration of the following pharmaceutical companies: Otsuka, TMB y Polyklyn.
The second activity to mark World IBD Day during the whole month of May will be to inform about IBD and raise the awareness about patient’s needs.We are planning to increase the visibility of IBD on Twitter. Our aim is to send tweets with the hashtag #nopucesperar (I can’t wait) and @ACCUCatalunya. Do you want to collaborate?
We need your help: We want you to tweet citing the hashtag #nopucesperar and explaining a reason why you cannot wait, do, look at, eat, read, etc… and don’t forget to mention @ACCUCatalunya and retweet your message! You can also add any other hashtags or info that you want to write on your tweets. Thanks for your participation!
Finally, another activity will be the broadcast of video about IBD that will be shown on TV screens at subways and buses from Barcelona and that it is also being shared on social networks
Date: the week starting 19 May
Place: throughout the country
On the occasion of World IBD Day, the Uruguyan association of Crohn´s and Ulcerative Colitis (ACCU) organised the following activities:
An information stand was placed on the main avenue of Montevideo where volunteers distributed leaflets to passer-bys. Many members of ACCU participated as well as other partner organisations such as Arroyo Seco and Adhipu / Atueru. We were also visited by Dr Alfredo Toledo from the Health Foundation Medical Union of Uruguay and the national movement of Public and Private health service users.
leaflets were distributed in a a new shopping center
29 May: as part of the World Digestive Health Day we attended to the business of the Society of Gastroenterology Uruguay where the subject was treated intestinal mi. crobiota : its importance to health and disease ( www.sgu.org.uy).
For more information on our World IBD Day 2014, please visit our website: http://www.accu.com.uy
Date: month of May
Place: throughout the country
A wide range of activities were organised to raise awareness about IBD such as participation in artistic-gastronomical events organised through out Argentina. The Fundation Más Vida organised a cooking class on “IBD and nutrition” and gave further informative talks about IBD both on radio and television.
Starting from 10 May Más Vida prepared a IBD kit including medical information, symptoms of IBD, WHO disability indicators, results of the IMPACT study etc. This kit was distributed to patients so that they can present it to their local Ministry of Health, Educatoin, Labour, healthcare professional etc.
For mor information please visit our website (in Spanish only): http://www.masvida.org.ar/
Date: 12 May
Place: Sao Paulo and regional chapters
As in previous years ABCD organised a charity walk in the Ibirapuera Park, Sao Paulo as one of its main event as part of a wider media campaign for awareness raising (during the week between 12 and 19). Other walks and media advertisements also took place in our chapters around the country. More info: http://www.abcd.org.br/
Date: 19 and 20 May
In Bulgaria, we celebrated the World IBD Day with two major events - an awareness raising campaign in the Sofia's center and a meeting open for discussions and exchange of opinions between doctors and patients.
On the 19th, through a provocative campaing that took place on two key locations in the Bulgaria's capital city, we attracted passers-by and provided them with leaflets and more information regarding IBD, its symptoms and the challanges patients with IBD face. On the following day, the 20th, a meeting between doctors, nurses, patients and people generaly interested in or affected by IBD was sheaduled in one of the hospitals most active in IBD treatment in Bulgaria. Its aim: - to discuss and find ways to increase the quality of life of people affected by IBD.
More info at: www.babkuk.org/
Date: month of May
Place: across Canada
In celebration of World IBD Day, the Crohn’s and Colitis Foundation of Canada (CCFC) is proud to announce Canada’s first endowed chair in ulcerative colitis research. Established at McMaster University’s Michael G. DeGroote School of Medicine, one of the world’s top 10 research programs in digestive health research, this $3.5 million endowment will shed light onto a disease that impacts more than 100,000 Canadians, and millions more worldwide.
This new position has attracted a world-class scientist as its first holder. Dr. Walter Reinisch is a clinician scientist and currently an associate professor of gastroenterology at the Medical University of Vienna in his native Austria. After final approvals the position will be named the Audrey Campbell chair in Ulcerative Colitis at McMaster University.
Dr. Kevin Glasgow, CEO of the CCFC, said at a May 15th announcement, that the new position is being established because medical research is the only hope for finding cures and better treatments for inflammatory bowel diseases.
Glasgow added: “CCFC is particularly proud to partner with McMaster to unveil this unique Chair during May. Sunday, May 19 is World IBD Day and the impact of this important investment in ulcerative colitis research is really global in scope and relevance.”
More info: http://www.ccfc.ca/
Date: 25 May
Place: Prague, Ladronka park
On 25th May 2013 the members and the supporters of the Czech IBD Patients Association met in the Prague's park Ladronka, and together we started the happening at the occasion of the World's IBD Day. It was for the first time that the patients in the Czech republic celebrated this day. The main goal of this happening was the creation of a giant serpent made out of toilet paper rolls. The serpent symbolized the daily difficulties of the patients with IBD and the increasing amount of IBD patients. The event was held under the patronage of the mayor of Prague.
131 members and the supporters of the association participated , although the weather was not too friendly. 19.706 rolls were collected and together we made the toilet paper roll serpent (snake) with a length of 1.8 km. The sun shone shortly during threading the rolls into the snake as a confirmation of our efforts. The rolls were collected by IBD patients since September. And not just by those who could come to this happening, but by many other patients who brought the rolls to the gastroenterologists ambulances ( the collecting points) or send them to our association´s office.Also doctors and nurses in IBD clinics across the country expressed support for this event and collected the rolls with us. Some of the rolls were painted by children. The event was attended by the President of the Slovak Crohn Club Mrs. Viola Štěvůrková and Dr. Martin Bortlík, representing the Czech IBD doctors working group. Both representatives actively joined the happening.
The programme continued in the spirit of competitions and games, where the main property was toilet paper. One of the patients – Mrs. Irena Kousalova -who is a singer prepared a small performance of her own songs. The event was finished by the award for the best IBD nurse, who was voted by Czech IBD patients.
One of the gift to our members was the launch of our new website (www.crohn.cz). The patients can add the comments, discuss and inform us about their needs on this website.
The first celebration of the World IBD Day in the Czech republic was really succesful and was preceded by a press conference and visibility in Czech media. We hope we will continue in this tradition in the next years.
You can also see a video at the following link:
Date: 16 May
On the occasion of World IBD Day (official date 19 May) the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) organised a stakeholder round table discussion at the European Parliament as part of a wider awareness raising campaign within the EU institutions. Representatives from the medical community such as Prof. R Stockbrugger (United European Gastroenterologists) and Prof. M. Vecchi (San Donato Policlinico - Milano) debated along with Members of the European Parliament (MEP Cofferati, MEP Panayotova ) and EFCCA chairman, M Greco about concrete measures and actions that need to be put in place in order to ensure full citizenship of people with IBD. The debate initiates a public consultation process to develop recommendations for more effective governance to ensure that social, economic and health aspects of people living with IBD are considered in all policies. A Wiki platform will enable stakeholders to feed into the consultation process and the results will be represented at the global awareness raising at a conference taking place in October this year.
More info: www.efcca.org
Date: 16 May
Traditionally our national day, mainly based on communication and fundraising, takes place the first weekend of October. This year, AFA decided to join the World lbd day, with the goal of raising the general public’s awareness of the burden of the disease but also on lobbying to carry patient’s voices to Healthcare decision makers.
In France, ulcerative colitis is considered as the "small" IBD, so, the afa is launching a new communication campaign which will be unveiled at a press conference on May 16th.
On behalf of all the patients and their relatives, AFA is submitting a letter of inquiry on the urgency of the situation in IBD to Marisol Touraine, Minister of Social Affairs and Health.
For more information: www.afa.asso.fr
Download: letter to Ministry
Date: month of May
Place: across Greece
The Attica's Society of Crohn's Disease's and Ulcerative's Colitis' patients (ASCC) has organised the following activities on the occasion of World IBD Day:
The presentation aimed on raising awareness on IBD, the challenges patients face in their everyday lives in relation to food and the importance it has on assisting the medication and thus prolonging the periods of remission of IBD.
Date: 11 May
The Italian IBD association is organising an IBD information event on 11 May. For more information please visit:
Date: end of May
Crohn's and Colitis New Zealand is promoting the results of the New Zealand IMPACT survey with a photographic exhibition in Parliament at the end of May. Sam Sword is a Christchurch based photographer with Crohn's disease. He took a series of emotionally charged photos to graphically illustrate his journey with IBD. These moving photos emphasise the devastating statistics from the New Zealand IMPACT survey. Support groups will be raising public awareness of IBD in their regions, holding displays in shopping complexes and hospitals.”
For more information: http://crohnsandcolitis.org.nz/
Date: 15 May
The Norwegian IBD association (LMF) will organise a Webinar with medical treatments for IBD as a main topic. There will be information stands set up at Stavanger University Hospital, at the local assosiations and at a new hospital in Oslo. Moreover some activities with the medical industry are foreseen.
More info at: www.lmfnorge.no
Date: 19 May
Place: Katowice and Lodz
The problem we’re facing this year is that 19.05 is a public holiday (Whitsun Day) so everything is closed and we can’t rent any seminar room. The only option are outdoor activities. Therefore on 19 May the Silesian Branch of J-elita is organizing an event in Chorzow Park (the biggest in the area) in the Katowice.
We will build “a paper path with empty paper rolls put one next to the other (or one empty and one full). A string will go through all the rolls in case of strong wind. The way will lead to one of the public toilets together with a motto “help people with IBD to get to the toilet”. We will ask passers -by to join the construction so that they can learn what IBD is. In the end all the full rolls will be given to the hospital.
In the city of Łódź J-elita will join the annual students’ festival with a one hour happening. This will include the show of children’ band together with a fashion show of toilet creations (made of toilet paper). Unfortunately the event will be much smaller than it had been previously planned because of the holiday and no possibility for renting a part of the department store.
Let’s hope that the weather will not disappoint us! For more information please check: http://www.j-elita.org.pl/
Furthermore on 18 May the association "Appetite for Life" is organizing a "Appetite Nutrition Workshops" when it wishes to present the role and discuss great effectiveness of using enteral and parenteral nutrition in IBD. On 19th of May we wish to organize a charity concert to draw public and media attention to problems of IBD patients' quality of life. They are fed artificially simultaneously and sometimes have to spend 6 weeks in hospital instead of taking artificial nutrition at home.
You can find more information on our website www.apetytnazycie.org/en.
Date: 19 May
The Birmingham Children’s Hospital is hosting an IBD symposium, organised by IBD patients, for IBD patients and their supporters. The event will feature talks from a variety of different patients on topics including managing fatigue with IBD, going to university with your condition and much more. Plus a talk from the foul bowel author and Crohn's patient John Bradley. We plan on having group activities as well as dinner in the evening for all who wish to attend.
For more info from co-organiser Claire Hunt: email@example.com
Date: 19 May
Charity walk to raise awareness, get together to have a fun day out and raise some cash for this fantastic cause. Family-friendly activities based at the Hospitium (Museum Gardens) and a 5km charity walk through York. This year's fun and games will have an international theme, as it's also World IBD Day. Join us to walk, or to help as a volunteer http://www.nacc.org.uk/ content/general/ CCwalk.asp#top
Place: social media
CCFA will be highlighting World IBD Day with a campaign on social media for a few days leading up to May 19, which kicks off Digestive Disease Week. For more information please visit:
CCFA has also prepared a new Public Service Announcement (PSA) which can be viewed at the following link: http://www.youtube.com/user/CCFA?feature=watch.
The IBD patient organization “Mas Vida” is a still a very young association and has been constituted in September 2010 with the aim to promote and initiate studies, research and other types of activities that contribute to awareness raising of the disease and to improve the diagnosis, treatment and quality of life of IBD patients.
On 19 May it organized a press conference in Buenos Aires where journalists from specialist media and mainstream national media were invited. Two gastroenterologist (one specializing in pediatrics) provided information about Crohn’s disease and Ulcerative Colitis. This was followed by a patient testimonial explaining what it means to live with IBD in your daily life.
The press conference took place in a horse riding school in Buenos Aires and journalists were invited to see for themselves how it feels to cope with a new situation. They were asked to ride a horse (with the assistance of teachers) with the aim to draw an unusual parallel of the challenges faced of people living with IBD and how to take control of the situation.
Read the first press clipping for the event:
For more information please visit Mas Vida’s website: www.masvida.org.ar
In Australia we had a whole month of Crohn’s and Colitis awareness in May. This year our program carried the ‘Can’t Wait’ theme, conveying the key message that the IBD community can’t wait, and not just in regards to toilet facilities.
We can’t wait for shorter gaps between first consultation and final, correct diagnosis of IBD; for better access to specialist treatment and care; for the government to highlight IBD as a priority in its health programs; for employers and schools to acknowledge IBD as a valid medical condition and to properly accommodate those who are living with it; and for the general public to be more aware of IBD so that we can talk about it without feeling embarrassed or stigmatised. Visit our Can't Wait website for more information.
As part of the celebration of the World IBD Day, 19 May 2012, the Brazilian Association for Colitis and Crohn Disease (ABCD) organised the VII Walking for Crohn and Colitis at Ibirapuera Park, São Paulo city. With this activity we aimed to create public awareness about the importance of an early diagnosis and correct treatment of IBD. The walk will gather IBD patients, their relatives, doctors and those supporting the cause.
“ABCD is proud to join the international entities in the effort to spread the knowledge about IBD around the world, which forms part of our mission” says Dr. Flavio Steinwurz, ABCD President and a member of WGO (World Gastroenterology Organisation) IBD task force.
The ABCD initiative is internationally recognized for gathering hundreds of people and attracting IBD patients from all over Brazil.
One in 160 Canadians is living with Crohn's disease or ulcerative colitis, collectively known as IBD (inflammatory bowel disease).
IBD is most frequently diagnosed between the ages of 15 and 30, with the typical onset being in the early 20s. This is a crucial time in a young person’s life – they’re starting school or careers, getting into more seriously relationships – all of which can be disrupted by a painful, often embarrassing chronic illness.
This May 19, on World IBD Day, young Canadians living with Crohn’s and colitis have sported a World IBD Day badge on their social media channels to raise awareness about the impact of IBD on youth. Please support them by following these three simple steps:
- - Visit www.picbadges.com and search for World IBD Day.
- - Post your World IBD Day PicBadge to all of your social media profiles with this message (or one of your own): “Wear your badge on May 19 to raise awareness about the worldwide impact of inflammatory bowel disease.”
- - Encourage your family and friends to do the same!
The Bulgarian Crohn’s association is currently in the process of being formally constituted. The idea to form an association has been initiated by several Crohn’s patients who felt that there was a lack of information about Crohn’s disease and that there was a need for coordinated actions to improve the situations of people living with Crohn’s disease in Bulgaria. They initially met through a Facebook group and decided to push things forward. A first meeting of patients and three renowned medical IBD specialists took place in Sofia on 23 March 2012. Both sides, patients and doctors, were keen to collaborate in order to raise more awareness about the disease amongst the public, patients and the medical profession. The Crohn’s group has also been in touch with EFCCA as they would like to join and exchange much need information and experiences with “older” members and to support activities planned for IBD World Day.
Croatian Crohn’s and Ulcerative Colitis Association celebrated World IBD Day on the Flower Square in Zagreb on May 19th 2012. The HUCUK volunteers handed out leaflets and brochures to those interested, and also answered questions about inflammatory bowel disease (IBD) and the work of our Association.
The aim of this action was to raise public awareness on Crohn’s disease and Ulcerative Colitis in Croatia, and draw attention to the problems that the patients, estimated number being four thousand to five thousand, have.
You can see the slide show of the whole event on You Tube:
EFCCA – collaborating with the European Parliament to gain recognition of difficulties faced by people living with IBD.
Since 2010 EFCCA has been an active supporter of World IBD Day. EFCCA represents 27 patient associations throughout Europe and its main focus with regard to World IBD Day is to target policy makers of the European institutions such as the European Commission and the European Parliament in order to increase awareness about IBD and to improve life of the over 2.2 million people living with IBD in Europe.
This year EFCCA will host an awareness raising event in the European Parliament supported by several Members of the European Parliament (MEPs) who will also support an initiative to create more attention on the difficulties that IBD patients have to face and, in particular on the lack of harmonized recognition, across the 27 European Member States, of the rights and needs of people living with IBD.
The support that EFCCA is receiving from the members of the European Parliament is not only a symbolic action but also a clear statement in favor of IBD people and patients in general and it might be the first step of a legislative process able to fill the lack of harmonization and to eradicate the discriminations on IBD in the territory of the European Union.
For more information please visit our website: www.efcca.org
afa is celebrating its 30th anniversary in the fight against IBD. This fight is to support medical research by financing projects selected by our Scientific Committee – up to 5 million euros – in fundamental as well as clinical research. The number of scientific publications is impressive thanks to the impulse of afa.
This fight is to support the patients and their children, relatives and friends: with 22 delegations, we stay in touch with their problems by giving out information, by supporting them, whether psychologically, medically or socially. This fight is to represent the patients, to be their voice and to express their life experience to political and medical decision makers; to raise public awareness through communication campaigns (2012 is the 3rd).
Traditionally, our National IBD Day is in October. This 6th October 2012, the theme will be « Show us your guts! » promoting sports and other cultural events throughout France. We hope to set aside two dates in 2013 : one in May to develop awareness and the other in October to raise funds.
Be sure to see us with EFCCA in Brussels on 15th May to launch the question proposals to the European Parliament during the World IBD Day.
For more information, see our website: www.afa.asso.fr
"Crohn's Disease and Ulcerative Colitis are not a TABOO!"
That was the message with which the "Attica's Society of Crohn's Disease and Ulcerative Colitis Patients" (ASCC), celebrated World IBD Day, in a public awareness event on Saturday, May 19, 2012 downtown Athens in Korai Square, with the support of the Municipality of Athens and under the auspices of the Ministry of Health and Welfare. The members of the ASCC, informed the public about the daily difficulties that the patients are facing, the importance of early diagnosis as well as the new available therapies.During the event "Motus Terrae", a street theater group, participated with a specially designed theatrical performance, presenting in an original way the practical and psychological problems faced by patients in their daily life.
Please watch the video: http://www.hellasnews.tv/site/index.php?option=com_seyret&Itemid=90
This is the first time Ireland will celebrate World IBD Day. The Irish Society for Colitis and Crohns Disease (ISCC) is aiming to raise awareness of IBD in Ireland.
There will be an awareness event in Beaumont Hospital, Dublin which will further aim to promote IBD along with having a patient representative present.
The ISCC Youth Group is hosting a charity zorbing event on May 19th in Dublin. In conjunction with the the society the Youth Group will also launch a "Top Tips" information leaflet based around the themes of well being and sport. We are also delighted to be launching our Facebook and Twitter accounts. We will also take the opportunity of World IBD Day to raise further awareness within the Irish media.
The highlight of our World IBD Day activities will be a “toilet paper” battle – in this way we want to get attention from decision-makers to our problems such as lack of access to new biological therapies.
"We’re joking among ourselves that the voice coming from the toilet is barely audible, because the most common and troublesome symptom of IBD is persistent diarrhoea. Hence the idea to celebrate our Day is for the IBD patients kind of “coming out of the shadow” and also, in a cheerful and attractive way showing our iflammatory problems "- said Dr Malgorzata Mossakowska, vice president of J-elita.
In Warsaw we start on the 17th with a press conference. Then, on the 19th there will be lectures and an outdoor event in the hospital’s gardens. Participants will benefit from consultation with specialists, talk to other patients, visit the stands of exhibitors, go first aid course, watch performances by dance groups and learn the salsa dance steps. The jury will choose the winner of the most interesting “toilet costume”. Picnic will be ended with the toilet paper battle.
Another toilet paper battle will happen in Katowice. Anyone interested can take part in the fight (just bring a colorful rolls of toilet paper and stick them in your hands - as a distinctive sign!). It will be held punctually at 17.00. Last year it attracted more than 250 people and looked like this: http://youtu.be/lXCGzc0gfKs
Wroclaw is the third city where we will celebrate the 19th of May. To show the patients that the doctors thoroughly support our activities they will present several lectures for the patients and answer their questions.
As far as Krakow is concerned, our members organized and took part in a photo session entitled “WC out – coming out from the toilet” The pictures will be presented in all the other cities and published in several magazines.
For more information please visit our website:
On World IBD Day, the Society for IBD will organize a major set of communication activities. The Communication campaign will run under the slogan "Currently indisposed - thanks for understanding" and is intended to improve:
- - understanding and knowledge of symptoms, because early detection and diagnosis can prevent later complications and
- - understanding of people with IBD and their specific needs, because this disease affects quality of life in all aspect and requires a lot of adjustment of lifestyle.
With this campaign the IBD society wants also to reach out to the professionals, particularly general practitioners and urge them towards early detection, faster diagnosis and comprehensive treatment of people with IBD.
The special feature of this communication campaign will be a series of short street theater performances that will try to present the problems of IBD to passers-by in an interesting manner. The performances are planned on the following times:
- Saturday, 12 May at 10.30 and at 12.30 in the center of Ljubljana,
- Tuesday 15 May at 12.30 in the center of Ljubljana,
- Friday, 18 May at 12.30 in the center of Maribor,
- Saturday, 19 May at 10 30 and at 12.30 in the town.
Please watch video link to street theatre performance on the story of Prince Erasmus Predjamski who died on a toilet hit by a cannon ball and betrayed by his vallet.
Among the most important communication activities will be the setting up of the human size silhouettes in more frequented events and places. These silhouettes represent a variety of roles, occupations of people (eg. physicians) who are currently indisposed due to the departure to the toilet. This is also explained by the sign placed on the silhouettes. In this video a silhouette was placed in a busy weekend market:http://youtu.be/ey6SYDaTyJs
For more information please visit our website: http://www.kvcb.si/
Members of the Norwegian patient association’s youth group together with the leader of the national Parliament’s Health Committee and a gastroenterologist will be participating in a popular Breakfast television show. One of the focus will be on IBD and on the work our association is doing. The gastroenterologist will stay on the programme for the entire show (150 minutes).
Other activities on World IBD Day include information stands in several cities in Norway (a huge stand at Central Station in Oslo) with roll-up's, toilets, toilet-papers, members in same dresses, balloons and giveaways.
In the evening there will also be a IBD medical webinar which will be transmitted via internet. Patients may follow the webinar and send in their questions via Facebook.
We will also launch our new web-site at www.lmfnorge.no as well as a new application for android- and i-phones "Porselensappen" with an interactive application for finding and registering toilets, linked to google maps. It's free for everyone, and has informations about IBD and LMF.
For more information please visit our website: www.lmfnorge.no
We have dedicated the whole of the month of May to raising awareness of IBD. Our theme this year is IBD Sports and Fitness, using the public interest in the London Olympics to highlight how IBD affects fitness and participation in Sport. Through a special website we conducted a survey of nearly 1,000 members and have found that about one third do not take part in any exercise or sporting activities and a quarter said their fitness was low. 80% had had to give up a sport at some time either temporarily or permanently. You can find the full results in a report on our special campaign website www.ibdsportsandfitness.co.uk
Take the Challenge!
64% of the survey respondents have agreed to set themselves a challenge for May to do some form of exercise or sport. Hundreds of people will be walking for Crohn’s and Colitis UK in York (May 13) and London (May 26) .
Five sporting champions who have IBD have spoken about their life with Crohn’s or Colitis to help us with our media campaign. You can see their stories on our campaign website (embedded link to www.ibdsportsandfitness.co.uk)
Check out this great article: Olympic kayaker modifies training to deal with Crohn's
Carrie Johnson will make her third Olympic team in women's sprint kayaking. After the London Games, she will study to be a veterinarian....
View the complete article at http://www.freep.com/apps/pbcs.dll/article?AID=/201206091238/USAT-SPORTS-OLYMPICS-LONDON-CANOE/USAT55480360
On 15th May 2012 Ex England Rugby Captain Lewis Moody and National Champion Power Lifter Henry Tosh took part in a media campaign working towards raising the awareness of Crohn’s disease and Colitis.
Both athletes spoke of how they personally manage these incurable conditions, how common the conditions are and where any sufferers can go to find out more information. The media outlets ranged from Sky Sports News to BBC Radio 2, with the interviews reaching a staggering 154 stations and an audience of over 51,000,000 people. With the disease affecting 1 person in 250 they hope that this will have had a life changing affect on hundreds of thousands of people.
Lewis spoke of the day stating, ‘I am absolutely delighted with the outcome of our campaign so far. Being such an understated illness I hope that we have helped people to understand it a little better. Most importantly I hope people now know where they can go for advice and help, something I wish I had the access to in the early stages of my condition.’
Staff at the charity’s offices in St Albans held a working lunch for their corporate supporters and Champions and then introduced their new mascot figure, Teddy Tum Tum, to their staff and supporters to mark Crohn’s and Colitis month and celebrate World IBD Day this week.
On 29th May it is anticipated that over 700 people will participate in a national Walk from Victoria Embankment Gardens, to raise awareness and funds for the charity and its work. The charity is still looking for volunteers to help– “We need a team of potential volunteers to wear the Teddy suit – the kids love it, but it can get a bit hot!” admitted Suzi Clark, director of Marketing and Fundraising. The charity and its supporters have already organised major Walks in Rutland and York this month, engaging over 700 people as participants or volunteers.
Please visit www.crohnsandcolitis.org.uk/walks to find out more about its Walks or visit http://www.ibdsportandfitness.co.uk to see film clips of its Champions and download its report on IBD: Sport and Fitness..
This year the Israel Foundation for Crohn’s Disease and Ulcerative Colitis (CCFI) is focusing its work around the subject of well-being and wellness with the aim to bring an inclusive and comprehensive approach to treating and living with IBD. Activities planned for this year will put an emphasis on the importance of a healthy life style as well as the body and mind and will promote wellness and well being.
Specifically for the World IBD Day CCFI will launch a month long media campaign that promotes awareness for IBD World Day and will carry out 4x4 Jeep trips event for children living with IBD.
For more information please visit the CCFI website or write to firstname.lastname@example.org
Information coming soon.....
Crohn's and Colitis New Zealand is planning a media-rich campaign for World IBD Day on 16th May, commencing with our ‘purple ribbon’ event in the grounds of Parliament. Over 100 local members and family, wearing purple t-shirts will join together to form a purple ribbon and then reform to spell IBD.
We hope to have photos available almost immediately – so keep an eye out on our website – www.crohnsandcolitis.org.nz. Local experts will join the throng, together with 18 year old Michael Robinson – one of our local heroes. Michael has recently had a purple ribbon tattoo on his arm, in recognition of his little brother, who at nine years old is struggling with Crohn’s disease. Our parliamentary host and Member of Parliament, Dr Jackie Blue, will be presented with the IMPACT report. Four other local heroes will represent us around the country, all are being interviewed by their regional media.
National media is being targeted with the results of the IMPACT report, and the IMPACT questionnaire will be launched on our website.
Local support groups are planning to get out and about in their communities, with display and information stands. Wearing purple t-shirts, they will hand out pamphlets, give out purple ribbons and increase public knowledge of these devastating diseases.”
For more information please visit our website: www.crohnsandcolitis.org.nz
Information coming soon.....