Fabry disease


Where can I call to learn more about Fabry disease?

A Fabry center near you can be a great resource. The National Fabry Disease Foundation has a Fabry specialist finder on their website. Other websites that may be of help are:

  • Emory University Fact Sheet, updated 8/20/2015
  • Lysosomal Storage Disease Websites. (n.d.). Retrieved from http://genetics.emory.edu/patient-care/lysosomal-storage-disease-center/websites.html.
  • National Fabry Disease Foundation. (n.d.). Retrieved from http://www.fabrydisease.org.
  • Fabry Support & Information Group. (n.d.). Retrieved November 22, 2019, from http://www.fabry.org.
  • Discover Fabry. (n.d.). Retrieved November 22, 2019, from https://www.discoverfabry.com/.
  • Fabry Disease. (n.d.). Retrieved November 22, 2019, from http://rarediseases.org/rare-diseases/fabry-disease/.
  • 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.
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Are there good support groups for Fabry disease?

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:


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