Tackling rare diseases requires rare degree of cooperation
by Till Voigtländer, Austrian representative to the Expert Group on Rare Diseases and Expert on the Board of Member States on European Reference networks.
Patients with rare diseases often suffer from something else that can be as disabilitating as their illness. Isolation. The feeling that no one else knows what they are dealing with, that no one knows how to help them, that investments aren't being made to find effective medicines or even a cure because there aren't enough people who need it.
But although it can feel like it, they are not alone. Even if a rare disease is defined as one that afflicts no more than 1 out of 2000 people, collectively, some 6000 types of rare diseases affect a total of 30 million people in the EU.
And just as no one
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Also in this focus
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ORPHANET - Reference portal for rare diseases and orphan drugs
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EPIRARE - European Platform for Rare Disease Registries
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EUROCAT – European surveillance of congenital anomalies
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ENERCA - European Network for Rare and Congenital Anaemias
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ERCUSYN - European Register on Cushing’s Syndrome
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EUROCRINE -European Surgical Registry for Rare Endocrine Tumours
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EUHANET – European Haemophilia Network
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E-HOD – European Network and Registry for Homocystinurias and Methylation
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InNerMed-I-Network – Inherited Neurometabolic Diseases Information Network
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