These resources are registries designed to help people find others with the same rare disease, and connect with researchers. Matches can be found through online portals by comparing health and genetic information.

 

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MyGene2

A patient portal designed to help families find a community of others with the same rare disease diagnosis.

Click here for guide
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GenomeConnect

An online registry that allows you to securely share health data and genetic test results, and be matched with other users.

Click here for guide
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Undiagnosed Diseases Network (UDN)

A resource specifically for people who have yet to receive a genetic diagnosis explaining the cause of their symptoms.

Click here for guide