Cystinosis community

Cystinosis is a lysosomal storage disease characterized by the abnormal accumulation of the amino acid cystine.

My Best Friend by Ellen published 14 days ago

Nik, my brother, is twenty-two months older than me. He is nineteen years old, and is currently attending and living on campus at Indiana State University.
He has been living at Indiana State University for eight months. In the last eight months I have realized how important he is to me. Nik is not only my older brother, but he is also my best friend.
Nik is my best friend because I cannot only talk to him about normal everyday situations, but I can talk to him about my disease, cystinosis. When I try to talk to my parents about my d...

7th International Cystinosis Congress-Beyond Borders 2012 by ValerieH published 20 days ago

The Cystinosis Foundation is pleased to host the 7th International Cystinosis Congress-Beyond Borders at the Marriott Charles de Gaulle Hotel, Paris, France 28 June - 1 July 2012. In collaboration with AIRG-France and Cystinose France, the Cystinosis Foundation is pleased to return to Paris to host this important international meeting for families and individuals affected by cystinosis.


Serena Celebrates 21st Anniversary Of Transplant by Cystinosis Foundation UK published about 1 month ago

It was in 1990 that Sue Scott took the decision to donate a kidney to her daughter, Serena, who has Cystinosis. Now, in 2011, the Scott family are celebrating the 21st anniversary of the transplant that has transformed Serena’s life.
Serena has no doubt this operation saved her life, as she was already suffering from kidney failure. She was fortunate enough that several family membe...

Upcoming Conferences by ValerieH published 6 months ago

The Cystinosis Foundation is pleased to host the 7th International Cystinosis Congress in France during the summer of 2012 and the 1st International Cystinosis Congress in Brazil in October, 2012. Keeping in accordance with our history of hosting unique and highly regarded conferences that offer meaningful experiences for the entire family, the 2012 gatherings are sure to be memorable experienc...

Patient groups

  • Cystinosis Support Australia

  • Cystinosis Foun. France

  • Cystinosis Support Germany

  • Cystinosis Foun. Ireland

  • Mexican Cystinosis Association

  • Cystinosis Group Netherlands

  • Cystinosis Foun. UK

  • Cystinosis Foun. USA

  • Cystinosis Research Network

  • South Africa Support Group

  • Cystinosis Research Foundation

  • Cystinosis Foundation Venezuela

  • Italian Cystinosis Assoc.

  • Brazil Cystinosis Support


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