Welcome - Cystinosis Community
What is Cystinosis ?
Cystinosis is a lysosomal storage disease characterized by the abnormal accumulation of the amino acid cystine.
Source: Participating patient organizations visible belowCystinosis Resources
Latest Member Stories
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Partners and Patient Groups
RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community.
- Cystinosis Support Australia
- Cystinose 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
- Vaincre les Maladies Lysosomales