Fabry disease community support and resources

Last updated Aug. 5, 2024, by Robby Brumberg
Fact-checked by Patrícia Silva, PhD

Fabry disease support groups can be a vital source of encouragement, guidance, and community for people living with the condition.

Fabry disease is a rare, inherited genetic disorder characterized by an accumulation of fatty molecules inside cells. It can cause symptoms such as pain, kidney dysfunction, heart disease, and eye problems.

Fabry disease support groups and other networking resources can offer helpful information as well as camaraderie for those managing the disease.

Support groups

Being diagnosed with Fabry — or finding out that a loved one has the condition — can feel overwhelming. While addressing your medical needs is important, so is taking care of your mental health.

Joining a Fabry disease support group, whether in person at local support groups or virtually, can provide many benefits, both for those with the condition and for their loved ones and caregivers.

Connecting with others who are experiencing similar symptoms offers an invaluable sense of community and emotional support, along with access to practical guidance.

National Fabry disease support groups include:

Fabry Support and Information Group (FSIG) offers many services, including access to financial assistance, forums, events, and educational materials for those living with Fabry.
National Fabry Disease Foundation (NFDF) offers help finding Fabry specialists, along with networking opportunities and the latest in Fabry disease treatment. The foundation also offers access to free counseling, available 24/7.
Fabry Connect offers guidance on identifying the signs and symptoms of Fabry disease and has available practical support, education, and resources.

International Fabry disease support groups include:

Fabry International Network offers help in more than 50 countries.
Canadian Fabry Association supports research regarding treatment and management of Fabry disease and also coordinates networking and learning opportunities.

Those living with Fabry disease may also be able to find support and assistance through international and national organizations such as:

Online support

Fabry Disease News has columns, news stories, and health insights about Fabry disease. It also has its own social media platforms, including a Facebook page.

Other online resources, including through social media, are:

Fabry Disease Info and Support on Facebook
NFDF on X
FSIG on X.

Typing “Fabry disease” or “Fabry disease support” into the search function of YouTube, X, or other social media sites may also help you learn about upcoming events, relevant influencers, and other information.

Information for people with Fabry disease

Staying up to date on the latest in research, advocacy, networking, and treatment options is an important part of managing Fabry disease.

Fabry Disease News offers current information on medical breakthroughs, experimental therapies, personal experiences, upcoming trials, and other Fabry-specific concerns.

There are international organizations and nonprofits that also have credible educational resources. Government websites offer guidance on clinical trials and specifics on treatment options and accessing support resources.

Fabry disease registry

The Fabry Registry is a continually updated database that tracks outcomes of people with Fabry disease. The Fabry Registry currently houses data collected from more than 5,000 patients from over 50 countries around the world.

All Fabry disease patients with a confirmed diagnosis are eligible for enrollment in the registry, and all medical professionals supporting patients with Fabry disease can also participate to help shed light on treatment tactics and monitoring symptoms over time.

The Fabry Registry compiles crucial data that practitioners can use to help refine best practices around the world and bolster understanding of the disease.

Financial resources

Fabry disease treatment can be costly, and figuring out how to pay for medications and medical care can be stressful. But there are many potential sources of financial assistance available to help with some treatment, medication, and care costs, including:

Pharmacological companies that produce Fabry drugs may have financial relief or copay programs.

In addition, resources like Medicine Assistance Tool and NeedyMeds may offer help finding discounts on certain drugs.

Educational support

When it comes to managing Fabry disease, knowledge is power, both in terms of seeking support and finding the best treatment options. There are many opportunities for those hoping to have a deeper understanding of Fabry or build a more robust awareness — including through advocacy — of the condition.

The Fabry International Network hosts a yearly Fabry Expert Meeting that brings together the world’s foremost Fabry experts to share the latest in best practices.

April is Fabry Disease Awareness Month, and the first Saturday in April is International Fabry Women’s Day.

There’s even a “FabryCast” podcast to listen to while on the go.

Medical information

Building a strong, collaborative, and empathetic medical team is essential for people managing Fabry disease.

Often your healthcare team can be a resource for Fabry disease education. You can ask them to keep you updated about new treatments.

They are also there to advise and guide you if your symptoms change or become worse.

Additional resources for medical information may include pharmaceutical companies and organizations that specialize in the disease.

Fabry Disease News helps you stay current on Fabry disease developments with the latest news about the disease as well as columns written by people living with the condition.

Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.