Support Groups

Print Friendly, PDF & Email

There are a number of support groups available. Click on the links below to see which one is the best match for you. For one-on-one support, contact our VP of Family Support, Jen Wyman at

U.S. Cystinosis Organizations

Cystinosis Research Network Facebook – Open Page
Cystinosis Research Network Facebook – Closed Group
Cystinosis Research Network Twitter
Cystinosis Foundation USA
Cystinosis Research Foundation

"I had the honor of being a volunteer at the 2017 CRN Family Conference. The patients and their families are the most incredible people I have ever met."

-Lisa, Family Conference Volunteer

International Cystinosis Organizations

AIRG España
Australian Cystinosis Foundation
Cystinosis Australia Facebook
Brazil Cystinosis Facebook Support: Grupo de Suporte à Cistinose Nordeste – Brasil
Grupo Cistinosis España
Cystinosis France
Cystinosis Foundation Germany
Cystinosis Foundation India
Cystinosis Foundation Ireland
Cystinosis Network Europe
Italian Cystinosis Association
Cystinosis Mexico AC
Cystinosis Group Netherlands
Cystinosis Foundation South Africa
Cystinosis UK
Vaincre les Maladies Lysosomales

Rare Disease Organizations

EURORDIS Rare Diseases Europe
Everylife Foundation
Genetic Alliance
Global Genes
Lysosomal Storage Disease Network

National Organization of Rare Disorders
NIH Office of Rare Diseases

Kidney Organizations

American Association of Kidney Patients
National Kidney Foundation

Wish Organizations

Children’s Wish Foundation International
Children’s Wish Foundation of Canada
Make-A-Wish Foundation America