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Orphanet

The portal for rare diseases and orphan drugs

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Rare diseases are rare, but
rare disease patients are numerous

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Access our Services

  • Inventory, classification and encyclopeadia of rare diseases, with genes involved
  • Assistance-to-diagnosis tool
  • Emergency guidelines
  • Inventory of orphan drugs
  • Directory of medical laboratories providing diagnostic tests
  • Directory of expert centres
  • Directory of ongoing research projects, clinical trials, registries and biobanks
  • Directory of patient organisations
  • Directory of professionals and institutions
  • Newsletter
  • Collection of thematic reports: Orphanet Reports Series

Read Orphanet reports

  • Prevalence of Rare Diseases
  • Disease registries in Europe
  • European research projects & clinical networks
  • Lists of medicinal products
  • Orphanet Activity Reports
  • Satisfaction Surveys

Contribute to Orphanet

  • Register your activity
  • Sponsor Orphanet

Download Orphanet data

  • Orphadata

Orphanet in partner countries

  • Armenia
  • Austria
  • Belgium
  • Bulgaria
  • Canada
  • Croatia
  • Cyprus
  • Czech Republic
  • Denmark
  • Estonia
  • Finland
  • France
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  • Italy
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  • Lebanon
  • Lithuania
  • Luxembourg
  • Morocco
  • Netherlands
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  • Poland
  • Portugal
  • Romania
  • Serbia
  • Slovakia
  • Slovenia
  • Spain
  • Sweden
  • Switzerland
  • Turkey
  • United Kingdom

Newsletter

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  • Read previous issues
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Other documents

  • Council Recommendation on an action in the field of rare diseases
  • State of Art of rare diseases

Other rare diseases websites

  • Rare Diseases - European Commission
  • EUCERD
  • European Medicines Agency
  • IRDiRC
  • Office of rare diseases research (US)

Events

See all
    • May 22
      Autoinflammation 2013: 7th International Congress of the International Society of Systemic Auto-Inflammatory Diseases 22 - 26 May 2013, Lausanne, Switzerland
    • Jul 17
      8th International Prader-Willi Syndrome Conference 17 - 21 July 2013, Cambridge, UK
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ORPHANET DATA

  • Diseases 5,954
  • Expert centres 4,942
  • Laboratories 5,424
  • Professionals 15,019
  • Daily visitors 12,810
  • Go to INSERM website
  • Link to the French Ministry of Health
  • Link to CEE website
    • With the support of
    • Go to AFM website
    • Go to LEEM website
    • Go to cnsa website
    • Go to LFB website
    • Go to GSK website
    • Go to Groupama website
    • Link to HON website

Our Website does not host any form of advertising | Our partnerships do not influence our editorial policy

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Orphanet version 4.9.17 - Last updated: 2013-05-25

ORPHANET USER SATISFACTION SURVEY 2012

Welcome to the Orphanet User Satisfaction Survey 2012.

Your opinion is essential in improving the services offered by Orphanet. Your contribution to this survey is also indispensable for our funding agencies.

Please could you take 5 minutes of your time to answer the following questions?

Answer the survey