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Publications
Dicembre 09
Concept paper: Improving Access to Orphan Drugs (11th ERTC Workshop)
Novembre 09
EURORDIS Policy on Financial Support by Commerical Companies
Maggio 09
POLKA: Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases
Febbraio 09
The Voice of 12,000 Patients
Febbraio 09
La Voix de 12 000 Malades
Novembre 08
Centres of Expertise & European Reference Networks for Rare Diseases
Novembre 08
Les centres d’expertise et les réseaux de référence européens pour les maladies rares
Giugno 07
Eurordis Charter for Clinical Trials in Rare Diseases
Dicembre 05
Rare diseases: understanding this public health priority
Dicembre 05
Maladies rares : comprendre cette priorité de santé publique
Marzo 04
Rare Disease Info: Guidelines & Manual
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Rare disease blogs
Live from Tbilisi, Georgia
Wed, 02 Nov 2011 - Live from Tbilisi. I am at the 2nd South Caucasia Conference on Rare Diseases and Orphan
...
Report from Washington. The 1st US Conference on Rare Diseases and Orphan Products.
Wed, 02 Nov 2011 - The 1st US Conference on Rare Diseases and Orphan Products, co-organised by NORD
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Rare diseases are an example of the need for more Europe today
Wed, 05 Oct 2011 - After the impact on Europe of the US financial crisis two years ago, the EU is now shaken
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Do we need to rebrand rare diseases?
Wed, 05 Oct 2011 - I came home late from London last night. We’d just had a brainstorm with a group of
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