World IBD Day 2016

Worldwide, five million people live with Crohn’s disease and ulcerative colitis, conditions known as inflammatory bowel diseases (IBD). In most cases the illness can be kept under control with medication, but despite extensive research there is currently no known cause or cure for IBD and little public understanding of the pain and chronic suffering with which IBD patients courageously cope every day of their lives.

 

World IBD Day is marked on 19 May each year and is led by patient organisation representing 38 countries on four continents from Argentina, Australia, Brazil, Canada, 28 European nations through the umbrella organisation EFCCA, Israel, Japan, New Zealand to the United States of America.  Each year more IBD patient organisations and related NGOs are joining world wide efforts to raise awareness about IBD.

 

In 2016, the European Crohn´s and Ulcerative Colitis (EFCCA) together with it´s 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 its impact on the quality of life for people with IBD.

As part of the campaign we are aiming to illuminate famous landmarks (in purple (the colour for World IBD Day) on 19 May 2016. Images of these highlighted landmarks/buildings will be shared on international and national social media channels aimed to create greater awareness around inflammatory bowel disease as well as on the World IBD Day website. (www.worldibdday.org).  Additionally, associations around the world are invited to organise supporting events providing detailed information about IBD and issues addressing the quality of life for people with IBD.

 

For more information please contact Isabella Haaf at This email address is being protected from spambots. You need JavaScript enabled to view it. and follow us on Facebook to be updated on new entries to the campaign:

https://www.facebook.com/EFCCA-European-Federation-of-Crohns-and-Ulcerative-Colitis-Associations-113949818678592/

Run with us to raise IBD awareness

As part of the World IBD Day celebrations EFCC organised participation at the Brussels 20 km marathon in order to raise awareness about Crohn´s Disease and Ulcerative Colitis, collectively known as inflammatory bowel disease (IBD), which affect over 3 million people in Europe.

 

The 20 km marathon took place on 31 May at 10 am in Brussels, Belgium. Starting point was at the Parc du Cinquantenaire.  

 

We had over 40 runners registered from 13 European countries including a mix of professional and amateur runners made up by patients, doctors, friends and family members. 

 

EFCCA  also had an information booth at the starting point of the race. The booth was run by a team of volunteers and supporters wearing the purple t-shirts of the EFCCA team and colour of World IBD Day and distributed purple ribbons and materials to inform people about IBD and about EFCCA activities.

 

EFCCA would like to thank the 20Km Brussels marathon staff for their support and assistance.

 

For more information please write to : This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Joining forces to fight IBD in the Middle East

Joining forces to fight IBD in the Middle East

 

On 28-29 November a group of people living with IBD and IBD healthcare specialists from 6 countries in the Middle East including Oman, Saudi Arabia, Dubai, Qatar and Kuwait met for the first time in Dubai to exchange ideas and experiences on how to improve the quality of life of people with IBD in the Middle East.

 

The European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA) with the support of the pharmaceutical company Janssen, organised a two day training workshop for patients and relevant stakeholders with the aim of supporting the establishment of patient support groups in the region.

 

The methodology of the training workshop applied a bottom up approach, allowing all participants to brainstorm on the actual needs of patients in the countries represented. During the discussions it emerged that - even though in several of the countries the quality and access of healthcare services was very high - people with IBD still felt very much isolated from the rest of society and there was little support and awareness about the disease. Participants identified a strong need for additional support both for people with IBD and also their carers/family members in terms of psychological support, fighting the stigma of IBD, accurate information available in Arabic about IBD, and other issues that affect the quality of life of these people.

 

The training workshop is a pilot project which EFCCA has developed in order to offer support to people living with IBD and their family members/carers in countries where there are no formal patient association representations.

 

The first feedback from the pilot workshop has been very positive in that it really encouraged an active participation of all delegates, including IBD patients, IBD nurses and IBD physicians showing their willingness to collaborate together in order to create a more holistic support for people living with IBD.  

 

From EFCCA´s long experience of working with patient associations, EFCCA is aware that the process of setting up a real support service for patients run by patients requires a considerable amount of time and a lot of effort and motivation from the people involved. But we are happy to have grown the first seeds amongst our colleagues in the Middle East during the pilot workshop and we will be available for further assistance as the seeds are starting to grow.  

 

Some photos taken during the workshop with participants explaining main discussion notes: 

 

IMPACT survey

New IMPACT publication

 

On the occasion of World IBD Day, we are making available our latest publication of the IMPACT survey.

 

The 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.

 

DOWNLOAD latest IMPACT publication

 

Go to previous IMPACT results

 

IMPACT FACTSHEETS

 

 

 


IMPACT survey

 

 

 

Damage and Disability

 


Diagnosis and health services

 


Treatment

 



Daily Life 

 


Education and Career

 


Other surveys

 

 
EFCCA Recommendations

 


What is IBD?

 

 

 

 

 

 

 

 

 

 

The survey was supported by an unrestricted educational grant from Abbott.

Stream of the 17 October conference

 

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