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

 

Live Streaming Now

 

Catch your dream summer camp

 

 

The "Catch your dream’ summer camp is a EFCCA initiative for young people with IBD  giving them the opportunity of having a break from ordinary life in a friendly, supportive and safe environment.

Read more: Catch your dream summer camp