Fabry Resources & Support

There are a number of resources and support groups that can help you and your family better understand and live with Fabry disease. You can also show your support for others living with the disease.

Learn more about Fabry disease with these brochures

A Visual Guide to Understanding Fabry

Learn about the genetics of Fabry disease, including what causes it, how it is passed from mothers and fathers, how it affects the body, and more.

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Women and Fabry

Learn about some of the unique effects Fabry disease can have on a woman’s body and quality of life.

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Pain and Fabry

This fact sheet outlines how and where people with Fabry might experience pain

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Understanding and Managing Gastrointestinal Symptoms In Fabry

Gastrointestinal symptoms are very common in people living with Fabry disease

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Hearing Loss and Fabry Disease

Understand how hearing impairment may occur in Fabry disease, ways to identify it, and potential treatment and methods to manage it

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Testing for Fabry Disease

Learn of the importance and benefits of testing for Fabry disease along with sources and locations to get tested.

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Fatigue and Fabry Disease

Learn about the effects of fatigue in Fabry disease and potentials ways to manage it.

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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 Support & Information Group

Fabry Support & Information Group:

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

The National Fabry Disease Foundation:

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)

Fabry International Network (FIN):

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 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 and Genetic and Rare Disease Groups

National Institutes of Health (NIH)

National Institutes of Health (NIH)

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

Genetic Alliance

Genetic Alliance

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

National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD)

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.

Show your support

Show your support for others living with Fabry disease. Select as many images as you like and share them through your social media. Come back often to see new images.