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

  • About Rare Diseases
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Fact Sheets

EURORDIS Fact Sheets

Informations services for rare diseases February 11 Rare Disease Patient Registries
Informations services for rare diseases November 10 Therapeutic Recreation Programmes for Rare Diseases Patients
Informations services for rare diseases November 10 Orphanet
Informations services for rare diseases June 10 Needs and Priorities for Rare Disease Research
Informations services for rare diseases May 10 Respite Care Services for Rare Diseases
Informations services for rare diseases December 09 National help lines for rare diseases
Informations services for rare diseases December 09 Centres of Expertise
Informations services for rare diseases December 09 European Reference Networks of Centres of Expertise
Informations services for rare diseases December 09 The European Network of Rare Disease Help Lines
Informations services for rare diseases June 06 What is an orphan drug?
Informations services for rare diseases June 06 The Eurordis Round Table of Companies (ERTC)
Informations services for rare diseases June 06 Orphan drugs: the role played by Eurordis
Informations services for rare diseases June 06 Survey of the delay in diagnosis for 8 rare diseases in Europe (‘EurordisCare2’)
Informations services for rare diseases June 06 Paediatric drugs and rare diseases
Informations services for rare diseases June 06 What is a rare disease?
Informations services for rare diseases June 06 Rare disease patient groups in the European Union
 
 


 
 

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RareConnect

Discover RareConnect, a growing social network of rare disease communities. RareConnect helps rare disease patients learn about their disease, meet others and share their experiences.

  • Alkaptonuria (AKU)
  • Alternating Hemiplegia
  • Atypical Hemolytic Uremic Syndrome
  • Behçet's Syndrome
  • CAPS
  • CDG
  • Cystinosis
  • Epidermolysis Bullosa
  • Familial Mediterranean Fever
  • Glut1 DS
  • Hereditary Spastic Paraplegia
  • Waldenstrom macroglobulinemia
  • Multiple Myeloma
  • Von Hippel-Lindau
 
 
 

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...
 

EURORDIS.org at a glance

  • About Rare Diseases
  • Living with a Rare Disease
  • About Orphan Drugs
  • Rare Disease Policy
  • Services to Patients
  • Get Involved
  • Training Resources
  • News & Events
  • Who we are
  • What we do
  • Membership
  • Library
  • Contact Us
  • Donate
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