Fabry disease

Organizations

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:

References

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?

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)

References

Fabry Support and Information Group (FSIG) Retrieved from http://www.fabry.org
National Fabry Disease Foundation (NFDF) Retrieved from http://www.fabrydisease.org
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.
Canadian Fabry Association Retrieved from http://www.fabrycanada.com
Fabry Information Network (FIN) Retrieved from http://www.fabrynetwork.org/

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Fabry disease

Organizations

Where can I call to learn more about Fabry disease?

References

More Organizations Content

Are there good support groups for Fabry disease?

References

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Fabry disease

Organizations

Where can I call to learn more about Fabry disease?

References

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Are there good support groups for Fabry disease?

References

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