Forum 3: Rare Diseases
Wednesday 1 October, 15:00-18:00

Managing rare diseases and Orphan Medicinal Products: a challenge for European health policy
It is crucial to push for a wider public awareness of rare diseases in order to improve affected patients’ situations. There is a need to understand the public health priority of patients suffering from rare diseases, to provide them with equal access to care and to establish centres of
reference. This forum aims to discuss actions for rare diseases at a European level and to give possible solutions how to improve the situation.

Chair: A Kent, COMP Member representing patients’ organisations, Director of European Genetic Alliances Network, UK
Rapporteur: H Stein, European Public Health Centre, Bonn

Panel discussion Meeting the challenge: an opportunity for demonstrating European added value
G Burgstaller, Governor of Salzburg, Austria
S Aymé, Chair of the Task Force on Rare Diseases
M Hengstschläger, Medical University of Vienna, Austria
B Valenta, Medical Director Technical Assessment, Global Clinical & Medical Affairs, Baxter BioScience, Austria
C Nourissier, General Secretary, EURORDIS, France

Session I: Integrating European initiatives with national activities

Initiatives at EU level >> Download
A Montserrat, Project Officer, European Commission, Health and Consumers DG

Romania as an example for the importance of national plans >> Download
C Vladu, Deputy Director General, Ministry of Public Health, Romania

Initiatives within the scope of the French Presidency of the European Council  >> Download
S Aymé, Chair of the Task Force on Rare Diseases, Director of Orphanet

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