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ERKNet for Patients – The European Rare Kidney Disease Reference Network
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Link to: Patient Journey
PATIENT JOURNEY
Link to: Patient Organisations
PATIENT ORGANISATIONS
Link to: Patient Communities
PATIENT COMMUNITIES
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RESEARCH
Link to: Events & Meetings
EVENTS & MEETINGS

Patient Communities

RareConnect Communities

RareConnect.org is safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.

  • Alagille Syndrome
  • Alstrom Syndrome
  • Amiloidosis
  • Atypical Hemolytic-uremic-syndrome
  • Behçet Syndrome
  • Cyoglobulinemia
  • Cystinosis
  • Familial Mediterranean Fever
  • Hereditary Rickets
  • Lowe Syndrome
  • Nephrotic Syndrome
  • Vasculitis
  • Von Hippel Lindau

Facebook Communities

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  • aHUS Alliance

Instagram Communities

  • Associazione Italiana Rene Policistico

Twitter channels

  • Association GitelBart (Twitter account)

Youtube channels

  • aHUS Clinical Channel (YouTube playlists)

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