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Biblioteca

Compartir información es una prioridad clave para EURORDIS. Al compartir información de temas de enfermedades raras, EURORDIS empodera a los pacientes de enfermedades raras y aumenta la concienciación sobre temas de investigación, de salud y sociales que afectan a sus vidas.

Position Papers

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Abril 08 Information to patients

Octubre 09 Improved Access to Orphan Drugs in the EU

Octubre 09 Orphan drugs: rising to the challenge to ensure a better future for 30 million patients in Europe

Febrero 08 Centres of Expertise and European Reference Networks for Rare Diseases

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Publications

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Diciembre 09 Concept paper: Improving Access to Orphan Drugs (11th ERTC Workshop)

Noviembre 09 EURORDIS Policy on Financial Support by Commerical Companies

Mayo 09 POLKA: Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases

Febrero 09 The Voice of 12,000 Patients

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Fact Sheets

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EURORDIS Fact Sheets.

Junio 06 What is a rare disease?

Junio 06 What is an orphan drug?

Junio 06 Orphan drugs: the role played by Eurordis

Junio 06 Paediatric drugs and rare diseases

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Nuestro boletín se publica mensualmente en 6 idiomas y contiene artículos, noticias y acontecimientos.

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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...
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...
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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