Hereditary cryohydrocytosis with reduced stomatin

Also known as: CHC type 2, Hereditary cryohydrocytosis type 2, Stomatin-deficient cryohydrocytosis, sdCHC

Disease-Specific Communities

Communities, advocacy groups, and support organizations for Hereditary cryohydrocytosis with reduced stomatin.

Community groups consist of other patients and families of patients with rare diseases that offer support and information on what to expect when dealing with the disease. They offer help in all different aspects of how a rare disease can affect the daily routine of the family, from where to get special supplies to what the latest treatment is for a given condition. Community groups offers hope and emotional support when needed.


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General Rare Disease Support Groups

Here are some patient advocacy organizations that support anyone in the rare diseases community.

Name Description
Genetic and Rare Diseases Information CenterOfficial NIH center for patient support
RareConnectSocial networking platform to connect with others affected by a rare disease
Global GenesPatient advocacy group for anyone in the rare disease community
Caregiver Action NetworkCommunity and information for caregivers