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Position Papers
Aprile 08
Information to patients
Ottobre 09
Improved Access to Orphan Drugs in the EU
Ottobre 09
Orphan drugs: rising to the challenge to ensure a better future for 30 million patients in Europe
Febbraio 08
Centres of Expertise and European Reference Networks for Rare Diseases
Febbraio 08
Research Priorities for Rare Diseases
Febbraio 08
Specialised Services for People Living with Rare Diseases
Febbraio 08
Centralised Procedure for the Scientific Assessment of the Therapeutic Added Value of Orphan Drugs
Ottobre 07
Orphan Drugs
Aprile 07
Advanced therapies
Febbraio 07
Health strategy
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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.
