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A better tomorrow for rare disease care and research

Rethinking investment and access in light of the EU OMP Regulation review

Wednesday, 29 September 2021 | 09:00-10:30 | Room 1

Organised by The European Confederation of Pharmaceutical Entrepreneurs (EUCOPE), in partnership with Sanofi

The fight against rare diseases must remain at the heart of Europe’s recovery. The EU Orphan Medicinal Product (OMP) Regulation has proven a tremendous success for patients, promoting research and innovation in the rare disease space since its adoption. Today, there are about 200 approved treatments for rare diseases, giving hope to more than 20 million people.

At the same time, the pandemic has highlighted fundamental challenges faced by rare disease patients, such as the need for disease screening, access to care, and stress. To continue supporting patients and provide treatment during the crisis, important lessons have been learnt regarding access to care and digitalisation.

As the OMP Regulation undergoes review in 2021, another pivotal legislative moment for rare diseases is on the horizon, and with it an opportunity to tackle remaining gaps in rare disease research, investment and care. Join us in this session to discuss how the EU can seize the opportunity to rise like a phoenix and address issues that prevent rare disease patients from accessing the care they need.

Speakers & panellists

  • Manuela Buxo, Head of Europe Region, Sanofi Genzyne
  • Michela Gabaldo, Head of Translational Project Management & Regulatory Affairs, Fondazione Telethon
  • César Hernández García, Head of Department of Medicines for Human Use, Spanish Medicines Agency
  • Kaja Kantorska, Policy Officer, Pharmaceuticals, Directorate-General for Health and Food Safety, European Commission
  • Yann Le Cam, Chief Executive Officer, EURORDIS-Rare Diseases Europe
  • Alexander Natz, Secretary General, EUCOPE

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