Better support for rare disease patients in Europe: A discussion on how to take the European Reference Networks success story to the next level

A discussion held on the 20th of May by various experts from different European countries

Wed, 2021 / 06 / 02
Last week, the Incisive Health Morning Club took place covering the topic of "Strengthening the European Reference Networks (ERN) framework to support rare disease patients in Europe". The Incisive Health Morning Club is held monthly and is organized in collaboration with The Health Link, our network of partners in Europe and beyond. With this fourth edition it called on four experts from different countries to explore how the EU and the Member States could further strengthen the ERN framework to better support rare disease patients in Europe.

Click here to read the full summary of the topics discussed by Dr. Holm Graessner (Coordinator of the ERN for Rare Neurological Diseases, Institute of Medical Genetic and Applied Genomics at University Hospital Tübingen), Dominique Sturz (Vice-Chair of Pro Rare Austria – Austrian Rare Disease Alliance), Prof. Robert Nisticò (Member of the EMA Committee for Orphan Medicinal Products, Professor of Pharmacology at University of Rome Tor Vergata) and Dr. Matthias Wilken (Head of Market Access at Bundesverband der Pharmazeutischen Industrie, BPI).

About the Incisive Health Morning Club:
The Morning Club is a unique opportunity for experts to collaboratively shed light on key EU health policy topics, including those that are less debated in the public sphere and that could be further prioritised by policy makers founded by our network partner Incisive Health, a British healthcare policy and communications consultancy. With this platform, Incisive Health gives a voice to patients, healthcare professionals, industry representatives, academia, and other key stakeholders on topics such as the future of brain health policy in Europe, the implementation challenges relating to new In Vitro Diagnostic Medical Device Regulation, the need to increase plasma donations across Europe. Feel free to contact us to discuss a topic that you would like to see included in the Incisive Health 2021 Morning Club calendar.

About the author

Ihre Ansprechpartnerin  Janina Spottke
Janina Spottke
B.B.A. Hons.
Fon: +49 511 64 68 14 0 – 0
Fax: +49 511 64 68 14 18
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