Speaker

Presentation

Dr. Nikola Sabev
Ministry of Health, Bulgaria

National health policy and rare diseases

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Mrs. Melanie Carr
European Medicines Agency (EMEA)

Orphan drugs addressing patients' needs across Europe

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Mrs. Christel Nourissier
European Organisation for Rare Diseases (EURORDIS)

The role of patient associations for improving the quality of life of people with rare diseases

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Dr. Erik Tambuyzer
EuropaBio

Towards an optimal framework for rare disease therapies in Europe

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Dr. Erica Daina
Clinical Research Center for Rare Diseases "Aldo and Cele Dacco", Mario Negri Institute, Italy

Importance of information centers for rare diseases for patients, doctors and research

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Mrs. Teresa Matulka
Central and Eastern European Genetic Network and Polish Society of MPS and Related Diseases

The CEE Genetic Network in Eastern Europe - tasks and perspectives

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Video HQ [13.7 MB]

Mrs. Marianna Lambrou
Greek Alliance for Rare Diseases

Greek alliance for rare diseases

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Mrs. Valerie Thibaudeau
ORPHANET

Increasing the awareness for rare diseases and orphan drugs in Eastern European countries

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