The first issue of the EFCCA Magazine 2015 is now available online. We hope you enjoy reading about our latest activities, news from our members and other interesting articles related to IBD. We would like to highlight our feature article on a training workshop that EFCCA has carried out in Dubai recently with the aim of promoting the establishment of patient support groups in the region. You will also find very inspiring stories such as "Nothing can stop us" by Cristian Garrido and a story written by EFCCA Youth Group Leader, Daniel Sundstein, about his trek to the Mount Everest Base Camp.
Many thanks to those who have contributed to it!!!!
Download Magazine Issue 1/2015
We are very saddened to learn that Dr Leon Pecasse has passed away today. Dr Pecasse has been a very important figure for EFCCA and his vision and engagement to improve life for people with IBD has been an essential contribution for the foundation of EFCCA 25 years ago.
Originally from the Netherlands, Dr Pecasse moved to Spain where he studied medicine at the university of Malaga, where he then graduated specialising in IBDs. Being an IBD patient and IBD physician put him in a unique position to provide better support for IBD patients and he also became one of the founding members of ACCU Spain (the Spanish IBD association).
Dr Pecasse served as the EFCCA chairman for several years. He will be dearly missed for his warm personality and commitment to EFCCA and as a dear colleague and friend.
May he Rest In Peace
Marco Greco, EFCCA chairman, EFCCA Board and EFCCA staff
BAB - Biologics & Biosimilars Survey
The European Federation of Crohn´s and Colitis Associations (EFCCA) invites you to participate in this important survey on Biosimilars.
The purpose of the survey is to assess patients´ knowledge about biosimilars and to find out to what extent patients are aware of the issues involved around biosimilars medicines. The results of the survey will allow us to elaborate a common EFCCA position to effectively advocate for better patients rights with the medicine licensing authorities and relevant governments institutions.
The questionnaire consists of 14 questions and will require approximately 10 minutes to complete.
This questionnaire has been designed in collaboration with Prof. Laurent Peyrin-Biroulet and his team - dept of Hepato-Gastroenterology CHU in Nancy.
Translations, technical tools and dissemination material are under unrestricted grant from Abbvie.
This year the EFCCA General Assembly will take place in Brussels from 29th to 30th May 2015. It will be our 25 th anniversary and we are looking forward to celebrate this occasion.
More information about the GA can be found on the Members Only Section of our website at: http://members.efcca.org/
On 31 st May, a day after the GA, EFCCA will also participate at the Brussels half marathon as part of our World IBD Day activities. A dedicated team of around 40 runners will be running under the purple colours of the EFCCA team in order to raise awareness about Crohn´s disease and Ulcerative Colitis.
Results of the EFCCA led IMPACT survey have been published in the latest issue of the Journal Crohn´s and Colitis. In the article entitled "IBD and health-related quality of life- Discovering the true impact" some of the main findings from the IMPACT survey have been highlighted. The results of this survey can be used in defining strategic priorities and planning projects and awareness raising activities. The unmet needs of IBD patients can be better demonstrated and communicated to the public, health service managers and politicians.
The Journal of Crohn's and Colitis is the official journal of the European Crohn's and Colitis Organisation (ECCO), and is concerned with the dissemination of knowledge on clinical, basic science and innovative methods related to inflammatory bowel diseases. The journal publishes original articles, review papers, editorials, leading articles, view points, case reports, innovative methods and letters to the editor.
The above mentioned article was written by Sanna Lönnfors in collaboration with Severine Vermeire, Marco Greco, Daan Hommes, Chayim Bell and Luisa Avedano.
Read more about IMPACT
EFCCA is going to co-chair the Public Health Day on IBD to take place on 18 October 2014 in Austria on the occasion of UEG Week.
United European Gastroenterology (UEG) is organising this Public Health Day at UEG Week 2014 in collaboration with EFCCA, the Austrian Crohn's Disease & Ulcerative Colitis Association (OMCCV), Austrian Coeliac Society (OAZ), Association Of European Coeliac Societies (AOECS) and IBS Support Group (ÖPRD).
Members of the public and UEG Week delegates are invited to attend this unique patient information event. Entrance is free of charge but registration is mandatory. This can be done in advance by email or on the day at the Public Health Day counter in the main entrance of the Austria Center.
This will be a unique opportunity for patients to hear directly from some of the world’s leading medical experts on the latest developments in Ulcerative Colitis, Crohn's Disease, Coeliac Disease and Irritable Bowel Syndrome. There will also be an opportunity for patients to talk with medical experts and other patients and to receive information from Austrian patient organisations and support networks.
To register for this event, please email the full names of all those attending to:
Date: Saturday 18th October 2014
For more information about UEG Week please visit: https://www.ueg.eu/week/