Get support, learn more, and connect to others living with Fabry

There are many Fabry disease-related support and education groups. They can help you learn more about Fabry disease, connect you to others with the disease, and keep you updated about the latest developments in Fabry disease. Click on the links below to visit some of these sites.

Fabry groups:

Fabry Support & Information Group:

www.fabry.org

This organization is committed to raising awareness about Fabry disease and its symptoms. It provides support and encouragement to patients and their families.

The National Fabry Disease Foundation:

www.fabrydisease.org

Learn about Fabry disease-related programs and projects, take advantage of the various resources available through the site, and get the latest information about living with and managing Fabry disease.

Fabry International Network (FIN):

www.fabrynetwork.org

The FIN website serves as an independent forum for various Fabry associations. It features information and news about Fabry disease and current and future treatments.

Fabry Facebook groups and pages:

Fabry Facebook groups

There are many Fabry disease-related Facebook groups dedicated to helping Fabry patients. Here are some active groups:

Fabry’s Disease Info and Support

National Fabry Disease Foundation (NFDF)

Fabry Support & Information Group

Fabry information:

National Institutes of Health (NIH)

https://www.ninds.nih.gov/Disorders/All-Disorders/Fabry-Disease-Information-Page ">

Get the latest information about treatment, clinical trials, publications, and Fabry-related organizations and support groups.

Genetic & rare disease groups

Genetic Alliance

www.geneticalliance.org

Learn about the many ways genetics plays a part of your life and learn more about Fabry disease.

National Organization for Rare Disorders (NORD)

www.rarediseases.org

This website provides information and resources for patients and their families, help with medication access, and opportunities to connect with others and to get involved.