Inherited small fiber neuropathies are very rare, with affected people scattered across the world. Many patients have questions about gene-test results, and researchers face challenges to communicate with enough patients to fully understand these life-long conditions. To address this, is establishing an on-line registry for people and families with genetic variants linked to sensory, autonomic, and small fiber neuropathy.

It will give them a private portal to access expert medical information, and, if they want, connect with others with similar variants. Based at the Massachusetts General Hospital's Nerve Unit, the registry will allow the Unit's researchers to get a fuller picture of the scope of symptoms of genetic neuropathies, and what tests and treatments work best. The goal is to better help all people with these conditions.

The Gene Registry is funded by a research grant from the MAYDAY Fund to Dr. A.L. Oaklander. There is no charge to participants, and information provided will be kept confidential, secured behind MGH's firewall. No information will be shared without your consent. There are no commercial or external sponsors, only patients and doctors coming together to help each other.

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