In addition to the National Fabry Disease Foundation (NFDF), there are many organizations in the U.S. and around the world supporting the Fabry community. Their respective focus areas range from supporting Fabry disease only (NFDF, FSIG and FIN) to including Fabry disease among other Lysosomal Storage Disorders (Lysosomal Disease Network/LDN World Symposium), and other national broad-focus genetic and rare organizations like NORD, Genetic Alliance, the EveryLife Foundation).
The Fabry Support & Information Group (FSIG) was founded in 1996 and is currently led by Jack Johnson. Website: www.fabry.org Email:
In Canada, the Fabry community is supported by the Canadian Fabry Association (CFA) currently led by Julia Alton. Website: www.fabrycanada.com
Many other countries have similar Fabry disease support organizations. To find other country organizations, visit the member's section of www.fabrynetwork.org. The primary aim of The Fabry International Network (FIN) is to facilitate collaboration between patient organizations to support those affected by Fabry Disease.
See the Fabry Resources tab on the top menu bar of our home page, then the Financial Assistance Programs tab to learn about financial assistance for people with Fabry disease.
You can find out about Fabry disease research/clinical trials at the U.S. clinical trials registry site at www.clinicaltrials.gov and many other clinical trial registry sites in other countries. You can search “Fabry disease” then narrow your search by checking the open studies box.
Connect With Us