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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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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EUROMAC (Registry for people with McArdle Disease and related muscle conditions)
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ENERCA - European Network for Rare and Congenital Anaemias
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EUROCRINE -European Surgical Registry for Rare Endocrine Tumours
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InNerMed-I-Network – Inherited Neurometabolic Diseases Information Network
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Diabetes
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