Links for Clinicians and Researchers

UK and Ireland Clinical, Research and Health Organisations

Registries

Eurordis and the Epirare Registry Project

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 479 rare diseases patient organisations in over 45 countries. EURORDIS’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and – directly or indirectly – to fight against the impact of rare diseases on their lives.

The EPIRARE project

Its general objectives are:

  • To analyse the present situation by conducting a survey targeting existing registries and to identify good practices
  • To build consensus and synergies to address the regulatory, ethical and technical issues associated with the registration of rare disease patients in Europe
  • To elaborate possible policy scenarios for EU policies on rare disease patient registries
  • To prepare the feasibility of a future EU rare disease registry platform

“Registers are managed by universities, industry and sometimes public administrations but they ultimately belong to the patients,” argues Dr. Monica Ensini, EURORDIS Registry Project Manager. “Therefore it is crucial and necessary to involve them actively in this process”.

If you are working on a rare disease registry or if you have something to share about the subject, you can still join the EPIRARE Network.
 
More information at www.epirare.eu

Other International Links

  • USA: US National Cancer Institute Inherited Bone Marrow Failure Syndromes
  • Eu: Orphanet Portal for rare diseases and orphan drugs  (Currently you need to enter Fanconi Anemia, not Fanconi Anaemia)
  • ENERCA the European Network for Rare and Congenital Anaemias. It started back in 2002, funded by the European Commission, with the purpose of offering an improved public health service to professional medical practitioners and patients in every aspect of rare anaemias.
  • EURORDIS is a non-governmental patient-driven alliance of patient organisations representing more than 479 rare diseases patient organisations in over 45 countries. EURORDIS’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and – directly or indirectly – to fight against the impact of rare diseases on their lives.
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