Fabryconnect.com is intended for United States residents only.

close

Dear Fabry Community,
During this challenging time with the global COVID-19 outbreak, it is all the more important we look out for and support one another. Your safety and welfare and that of your families always has been and continues to be Amicus' number one priority. Our commitment to the rare disease community will continue and we are only a phone call or email away. For questions or support, we can be reached at patientadvocacy@amicusrx.com or toll-free in the US at 1(866) 9-AMICUS (926-4287). NP-NN-ALL-00030520

Join the Community Information for Healthcare Professionals About this Site View our YouTube channel

Online Tools & Resources Brochures & Fact Sheets Support Groups Fabry Awareness

Online Tools and Resources

Fabry Disease Discussion Driver

Use our interactive Fabry Disease Discussion Driver tool to help organize your thoughts and questions for your next appointment.

link icon Visit Site

Fabry Family Tree Builder

The interactive Fabry disease family tree builder can help you identify other family members who may be at risk for Fabry disease.

link icon Visit Site

Fabry Connect YouTube Channel

Visit our YouTube channel for videos with useful information and resources to help manage the daily challenges of living with a rare, genetic disease.

link icon Visit Site

Fabry Disease Symptoms Tool

Recognize the signs & symptoms of Fabry disease using our interactive Fabry disease symptom tool.

link icon Visit Site

Brochures & Fact Sheets

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.

pdf icon Download

Fabry Disease Monitoring Brochure

A guide designed to help you keep track of different tests used to monitor Fabry disease.

pdf icon Download

Women and Fabry

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

pdf icon Download

Pain in Fabry Disease

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

pdf icon Download

Understanding & Managing Gastrointestinal Symptoms in Fabry

Gastrointestinal symptoms are very common in people living with Fabry disease

pdf icon Download

Fabry Disease & Hearing Loss

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

pdf icon Download

Testing for Fabry Disease

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

pdf icon Download

Fatigue in Fabry Disease

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

pdf icon Download

Fabry Disease Support Groups

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:

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

link icon Visit Site

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.

link icon Visit Site

Fabry International Network (FIN):

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

link icon Visit Site

Facebook Groups & Pages

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

Fabry Information and Genetic and Rare Disease Groups

National Institutes of Health (NIH)
Get the latest information about treatment, clinical trials, publications, and Fabry-related organizations and support groups.

link icon Visit Site

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

link icon Visit Site

National Organization for Rare Disorders (NORD)
This website provides information for patients and their families, help with medication access, and opportunities to connect with others and to get involved.

link icon Visit Site

Global Genes: Allies in Rare Diseases
Global Genes is a nonprofit organization on a mission to connect, empower and inspire the rare disease community.

link icon Visit Site

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.

Ways to Connect & Share

Join the Community

This website will be updated often with new stories about people living with Fabry disease, answers to your Fabry questions, and Fabry resources

Share Your Story

Your story can be a source of inspiration and education for other members of the FabryConnect community—and another person’s story can be helpful for you

Propose a New Fabry Disease Topic

Have an interesting topic about Fabry disease? We’ll do our best to give you the answers you’re looking for through short videos. Our goal is to answer the questions that matter most to the Fabry community.