Fabry Disease Resources

If you or someone you know has Fabry Disease it is helpful to get as much information as possible about the disorder. Talk with your doctor about other sources of information, including other healthcare professionals who can help you learn more about Fabry Disease and how it may impact you and your family. You can also contact the following organizations and foundations for more information about Fabry Disease.

BraveCommunity.com is intended for residents of the United States. Because rare diseases impact a small number of patients, the community of support and education often spans the collective efforts and experiences of patients, families, medical professionals, and researchers across the world. The following links may provide education about rare diseases that may be helpful to you. These sites may be subject to policies, regulations or laws that are different from those in the United States. Shire HGT is not responsible for the content on these sites except for those sites operated by Shire HGT. They may have different policies (including privacy policies) than BraveCommunity.com and may contain information that reflect local standards, including medical standards of care different from those in the U.S. You should discuss any information you receive on the internet about medical care with your doctor before making medical decisions.

Fabry Disease Educational Materials

Brave Community is pleased to provide specially developed Fabry educational materials. The links below offer additional detail about many aspects of Fabry disease including a disease overview, information on the various organ systems affected by Fabry disease, as well as information about well-being and management for individuals with Fabry disease

U.S. Resources

Ben's Friends
www.bensfriends.org
Children's Rare Disease Network
24701 La Plaza
Suite 201
Dana Point, CA 92629
Phone: 949-305-8656
info@rareproject.org
www.crdnetwork.org
Fabry Support & Information Group (FSIG)
www.fabry.org
Genetic Alliance
4301 Connecticut Ave NW
Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
www.geneticalliance.org
National Institute of Neurological Disorders and Stroke
National Institutes of Health (NIH) Neurological Institute
PO Box 5801
Bethesda, MD 20824
Phone: 800-352-9424
www.ninds.nih.gov
National Organization for Rare Disorders (NORD)
55 Kenosia Ave
PO Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100
Toll free: 800-999-6673 (voice mail only)
www.rarediseases.org
Patients Like Me
www.patientslikeme.com
Rare Project
www.rareproject.org

International Resources

Canadian Organization for Rare Disorders (CORD)
www.cord.ca
EURODIS - Rare Diseases Europe
www.eurodis.org
Fabry Association
9011 142 Street NW
Edmonton, Alberta, Canada
T5R 0M6
www.fabrycanada.com
Fabry Society of Canada
www.fabrysociety.org
Focus on Fabry (provided by Shire)
www.focusonfabry.com
Global Organisation for Lysosomal Diseases
www.goldinfo.org
The Nordic Fabry Group
www.fabry.dk

Publications

Here is a short bibliography of a few examples of published articles about Fabry Disease to read or to share with your doctor. You can use the Searching Medical Literature tutorial to learn how to search for the latest articles in medical journals, and be sure to ask your doctor for any new publications. This list is not a complete list of available published information about these topics.

  • Desnick RJ, Astrin KH, Bishop DF. Fabry disease: molecular genetics of the inherited nephropathy. Adv Nephrol Necker Hosp. 1989;18:113-27. [PubMed ID 2564247]
  • Grünfeld JP, Lidove O, Joly D, Barbey F. Renal disease in Fabry patients. J Inherit Metab Dis. 2001;24(suppl 2):71-74. [PubMed ID 11758682]
  • Linhart A, Lubanda JC, Palecek T, et al. Cardiac manifestations in Fabry disease. J Inherit Metab Dis. 2001;24(suppl 2):75-83. [PubMed ID 11758683]