WORLD IBD DAY WORK IN PROGRESS
As anticipated in the previous issue of our breaking news, EFCCA is collecting information on practices and initiatives on the World IBD Day planned by Member Associations. I'm particularly pleased to present you the first set of information coming from Crohn's and Colitis UK the brand-new working name of the National Association for Colitis and Crohn's Disease (NACC).
FEEDBACK FROM THE WORLD IBD DAY
Brussels, 19 May 2011
The sky is cloudy but weather forecasts are not very bad… fingers crossed.
9.45 AM – Marco Greco, Isabella Haaf and myself enter the Berlaymont building a little bit excited.
At 10.00 AM - Mrs Darmanin the head of the Cabinet of the Commissioner on Health and Consumers’ protection, Mr Dalli, is waiting for us.
EFCCA IS GLAD TO ANNOUNCE THAT THE WORLD IBD DAY WILL BE CELEBRATED IN BRUSSELS ON THE 19TH OF MAY ! IT’’S THE FIRST TIME WE ALL HAVE THE CHANCE TO RAISE AWARENESS AND GIVE PEOPLE WITH IBD A LOUDER VOICE IN EUROPE!
BACK FROM SWITZERLAND: SMCCV 25th ANNIVERSARY
DUBLIN - ECCO CONGRESS. EFCCA CONSOLIDATES COOPERATION WITH ECCO.
Adoption of the Code of Conduct removes the last barrier to the formal conclusion of the UNCRPD
The UN Convention on the Rights of Persons with Disabilities (UNCRPD), which entered into force on 3 May 2008, is the first human rights Convention signed by the EU. All EU Member States have signed the UNCRPD and a majority has signed its Optional Protocol too. The next step, ratification, is underway. Until now, 16 Member States have deposited their instruments of ratification at the UN Headquarters.
EUROPEAN MEDICINE AGENCY NEW WEB SITE
Rod Mitchell, our former Chair, who is currently the IAPO alternate at the European Medicines Agency Patient & Consumer Working Party sent us this relevant news. Being EFCCA a IAPO member I am more than pleased to circulate it to you all.
Running together to raise awareness on IBD
On 18 May 2014 the European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA) will participate in the Brussels half marathon to raise awareness about Crohn´s Disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD). IBD are two serious, chronic digestive diseases which which affect over 3 million people in Europe. IBD can be kept under control with medication, but despite extensive research there is currently no known cause or cure for IBD.
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).
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.