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Eurordis, Rare Diseases Europe The voice of rare disease patients in Europe

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Publications

Informations services for rare diseases December 09 Concept paper: Improving Access to Orphan Drugs (11th ERTC Workshop)
Informations services for rare diseases November 09 EURORDIS Policy on Financial Support by Commerical Companies
Informations services for rare diseases May 09 POLKA: Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases
Informations services for rare diseases February 09 The Voice of 12,000 Patients
Informations services for rare diseases February 09 La Voix de 12 000 Malades
Informations services for rare diseases November 08 Centres of Expertise & European Reference Networks for Rare Diseases
Informations services for rare diseases November 08 Les centres d’expertise et les réseaux de référence européens pour les maladies rares
Informations services for rare diseases June 07 Eurordis Charter for Clinical Trials in Rare Diseases
Informations services for rare diseases December 05 Rare diseases: understanding this public health priority
Informations services for rare diseases December 05 Maladies rares : comprendre cette priorité de santé publique
Informations services for rare diseases March 04 Rare Disease Info: Guidelines & Manual
 
 


 
 

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Rare disease blogs

  • Challenging times in 2010 for Rare Disease patients in Europe
  • Information to Patients Debate 2010; as if the Internet was still a walled garden
  • US Rare Disease Govt. Policy: Lifetime and Annual Caps Issue Not Yet Resolved
  • The EMEA is now called European Medicines Agency and the portfolio of pharmaceuticals is being transfered from DG Enterprise to DG Health & Consumers.
  • People living with rare diseases ask for plans, or national strategies, in 25 European countries.
 

EURORDIS.org at a glance

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