Are there good support groups for Fabry disease?
There are several excellent support groups for Fabry disease in the United States and around the world. Support groups are often the best way to find other living with Fabry disease and a great source for up-to-date and accurate information on clinical trials, resources, and treatment. A few key support and advocacy groups are listed below:
- Fabry Support and Information Group (FSIG) - a ThinkGenetic Advocacy Partner
- National Fabry Disease Foundation (NFDF) - a ThinkGenetic Advocacy Partner
- Canadian Fabry Association - a ThinkGenetic Advocacy Partner
- Fabry Information Network (FIN)
- A great list of Fabry support groups around the world can be found here: http://www.fabrynetwork.org/members/
Fabry disease revisited: Management and treatment recommendations for adult patients. Ortiz A, Germain DP, Desnick RJ, Politei J, Mauer M, Burlina A, Eng C, Hopkin RJ, Laney D, Linhart A, Waldek S, Wallace E, Weidemann F, Wilcox WR. Mol Genet Metab. 2018 Apr;123(4):416-427. doi: 10.1016/j.ymgme.2018.02.014. Epub 2018 Feb 28. Review. https://www.sciencedirect.com/science/article/pii/S1096719217307680?via%3Dihub Retrieved 12DEC19.