Support and resources for people living with Fabry disease
Fabry disease may be rare, but there is a community of people and wealth of resources available to help you better understand the condition. By learning more about the disease and its effects, you can become a stronger advocate for your health—or the health of someone close to you.
Patient advocacy groups for Fabry disease
The medical community’s understanding of rare and genetic conditions is always evolving. Making sense of the latest discoveries or recently updated information can be tricky when dealing with complex conditions.1
Patient advocacy groups (PAGs) are organizations that track the latest news on various disease states and explain the findings in simple terms for patients and caregivers.
There are several PAGs supporting the Fabry disease community. Visit their websites to learn more about them and the services they offer.
This listing is provided as a resource only and does not constitute an endorsement by Sanofi of any particular organization or its programming.
Fabry Support & Information Group (FSIG)
A nonprofit organization dedicated to raising awareness and providing support to caregivers of patients with Fabry disease.
National Fabry Disease Foundation (NFDF)
Supporting the Fabry disease community through education, assistance, identification, research, and advocacy.
American Kidney Fund (AKF)
A nonprofit organization that provides comprehensive programs on kidney health awareness, education, and prevention.
National Kidney Fund (NKF)
A nonprofit for those affected by kidney disease, with a focus on enhancing lives through action, education, and accelerating change.
American Association of Kidney Patients (AAKP)
An independent organization dedicated to improving the lives and long-term outcomes of kidney patients through education, advocacy, patient engagement, and the fostering of patient communities.
Resources to support well-being in Fabry disease patients and caregivers
The following materials offer insight and general information that could help support the well-being of people living with Fabry disease and those close to them.
Coping after a diagnosis
A conversation about what can happen after a Fabry disease diagnosis
Getting Your ERT Infusion
Coping after a diagnosis
Coping strategies for caregivers
Self-care tips for caregivers of Fabry disease patients
The importance of well-being
Hear why it’s vital for caregivers to find time for themselves
Getting Your ERT Infusion
The importance of well-being
Forming a support circle
Parents of children with Fabry disease provide a lot of care. Having reliable support for yourself is important. This guide could help you build a support network.
Videos to help you understand Fabry disease
Video: See how the Hills have rallied together to face Fabry as a family
Video: See how one family's understanding of Fabry disease has evolved over time
Video: The story of how one family adjusted to life with Fabry disease
Learn about support and resources available
If you or someone close to you is living with Fabry disease and you’re looking for resources or support, one of our Case Managers is available to speak with you Monday through Friday, 8AM-6PM ET.
Call 1-800-745-4447 (for English, press 3; para español, oprima 7) or email info@CareConnectPSS.com.
References
1 Patterson AM, O'Boyle M, VanNoy GE, Dies KA. Emerging roles and opportunities for rare disease patient advocacy groups. The Adv Rare Dis. Jan-Dec 2023;4:26330040231164425. doi:10.1177/26330040231164425
MAT-US-2511952-v1.0-11/2025