Links for Clinicians and Researchers

UK and Ireland Clinical, Research and Health Organisations

Registries

Eu Projects

  • 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
  • European Reference Networks – European Commission:  European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
  • 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.

Other International Links

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