EUROPLAN National Conference in Luxembourg - Rare Diseases

The Luxembourg Association for Neuromuscular and Rare Diseases – ALAN organized in collaboration with Eurordis (European Organization for Rare Disease) the EUROPLAN National Conferences in Luxembourg on the 19-20 November 2013.

The Conference was an opportunity for relevant national stakeholders (representatives from the ministry of health, social security, family, research and higher education, the central hospitals, medical doctors, scientific institutes such as CRP-Santé/CIEC and patient associations) to share their experiences and expertise, identify areas for improvement in the existing health system and social services as well as cross boarder health care. Other cross-cutting themes were discussed such as the creation of a registry for rare diseases and rare diseases platform. The proposed actions will form the basis for the development of a Rare Disease National Plan in Luxembourg.

Eurordis is a non-governmental patient-driven alliance of patient organizations in 58 countries covering over 4000 diseases and representing the voice of 30 million people affected by rare diseases. Its mission is to build a strong pan-European community of patient organizations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives. Eurordis supports the organization of National Conferences aiming the elaboration of rare disease national plans through the project EUROPLAN (European Project for Rare Diseases National Plans Development).

References:
(Page 32) Interview with the Conference organizer “Shirley Feider” (ALAN): http://www.dsb.lu/archives/ipad/semper55.pdf
Eurordis website: http://www.eurordis.org/
Europlan project web links:
http://download.eurordis.org.s3.amazonaws.com/emm2013/6_EUROPLAN-general_Final.pdf
http://www.europlanproject.eu/_newsite_986989/project1.html