European Conference on Rare Diseases 2010 – From Policies to Effective Services for Patients

The European Conference on Rare Diseases (ECRD), which takes place every two years, is a unique forum that sees patient representatives of all the rare diseases gather with health care professionals, academics, researchers, policy makers and industry representatives to discuss the most recent rare disease initiatives in the fields of research, health­care, information and social services. The 2010 event took place last May 13 to 15, in Krakow (Poland ). It was the largest to date, with 600 delegates coming from 43 countries from all over the world.

ECRD 2010, entitled From Policies to Effective Services for Patients, was the occasion to discuss strategic issues for the rare disease community. Amongst these, special attention was given to the National Plans for Rare Diseases, Centres of Expertise and European Reference Networks, Research and Treatments, Information and Specialised Services. The programme included presentations, debates, workshops, satellite workshops, a poster session, a welcome reception and plenty of opportunities for participants to network and meet informally. Overall, there were 25 different sessions covering eight themes, involving 73 speakers and 37 chairpersons. (For speakers, presentations and detailed program, please visit this site )

Also, the EU Committee of Experts on Rare Diseases was presented. The Committee will act as a sort of ‘Parliament’ of the rare disease community in order to follow up on the work initiated at the biennial Conference

“The ECRD 2010 Krakow has served to identify those areas that need better policies in order to fulfill the objectives of the Council Recommendation and to build momentum for national plans and strategies to be implemented across Europe,” declared EURORDIS CEO at the end of the conference,  Yann Le Cam.

The next ECRD conference will take place in 2012 in Brussels!

For more information, please visit these website:

_ The European Conference on Rare Diseases 2010

_Photos of the conference

_Video interviews about the conference

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