Health Insights:
Rare Diseases | February 2020
In the run up to Rare Disease Day 2020, I have interviewed three patient representations giving an insight into how they are strengthening their voice in the debate.
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We need a new EU-level orientation paper that can help tackle the challenges around the issue of rare diseases.
Interview with Antoni Montserrat
Membre du conseil de direction chez ALAN - Maladies Rares Luxembourg and Active Senior Active Senior on Public Health for the European Commission
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Overcoming HHT: not just a nosebleed but a life-threatening condition
Interview with Mildred Lundgren
Secretary of HHT Sverige, Member of HHT Europe, Member of EURORDIS Community Advisory Board (CAB) for HHT
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Living with Cavernous Angioma: why nobody should be left behind
Interview with Jana Bergholtz
Founder of Cavernöst Angiom Sverige (CASE) and Chair of the European Cavernoma Alliance (ECA)