Rare diseases aren't rare. How can European solidarity improve the daily life of 30 millions citizens?

Presentation on the recommendations of the EMRaDi project and discussion with European representatives and key stakeholders of the further EU policy developments regarding the approach towards rare diseases

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Invitation to the EMRaDi project event

Rare Diseases Aren't Rare.

How can European solidarity improve the daily life of 30 million citizens?

The EU policy developments on rare diseases and the recommendations from the INTERREG-funded cross-border project EMRaDi

How can we improve access to diagnosis and the quality of care? Which are the solutions to improve the life and the social inclusion of millions of patients suffering from a rare disease in the EU?

 This event is co-hosted by MEPs

Frédérique Ries (Renew Europe) and Pascal Arimont (EPP)

When?
5th December 2019

Where?
European Parliament,
Room JAN 6Q1, Brussels

Register now

For registrations received after the 25 November, access to the building cannot be guaranteed.

Programme


12.15: Registration

13.00: Opening speech (Frédérique Ries, Renew Europe)

13.05: Results and recommendations of the EMRaDi project (Caroline Glaude, Christian Mutual Health Fund, EMRaDi lead partner)

13.25: Panel discussion 

Enrique Terol (EU Commission, DG SANTE, ERN)
Colm Friel (European Court of Auditors)
Matt Bolz-Johnson (Eurordis)
Vincent Bours (CHU Liège)
Timo Clemens (Maastricht University)

Moderator: Tamsin Rose

13.55: Q&A

14.10: Closing speech (Pascal Arimont, EPP)

14.15: Networking

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05 12 2019

European Parliament, Room JAN 6Q1, Brussels