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Links

National Ciliopathy Support Groups

Alstrom Syndrome

  • Alström Syndrome UK
  • Alström Syndrome Europe
  • Retina UK

Bardet-Biedl Syndrome

  • Bardet-Biedl Syndrome UK
  • Retina UK
  • Bardet-Biedl France
  • Bardet Biedl Spain (ANASBABI CILIOPATIAS)

Jeune Syndrome

  • Jeune Syndrome Foundation UK

Joubert Syndrome

  • Joubert Syndrome UK

Polycystic Kidney Disease

  • Polycystic Kidney Disease Charity UK
  • PKD International

Primary Ciliary Dyskinesia

  • Dyskinesia Belgium
  • PCD Support Group UK
  • The Brompton Fountain
  • Kartagener Syndrom und Primäre Ciliäre Dyskinesie
  • DCP-Pisa
  • PCD Australia Foundation
  • Primary Ciliary Dyskinesia Foundation

Retinitis Pigmentosa

  • Retina UK

Usher Syndrome

  • Usher Syndrome Coalition USA
  • Retina UK
  • Sense UK

Rare Disease Alliances

  • Eurordis - the European organisation for Rare Diseases
  • NORD - National Organization for Rare Disorders USA
  • Genetic Alliance UK
  • Genetic Alliance USA
  • Rare Disease UK

Research Networks

  • UK Cilia Network
  • The Cilia Group Denmark

European Reference Networks (ERNs)

  • ERKNet - Rare Kidney Diseases, including ciliopathies
  • ERN Rare-Liver
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