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As awareness of Fabry disease grows, so does the number of groups that support the Fabry community and others living with genetic disorders. The list below includes many of these groups, in the United States and globally.

United States

Center for Patient Advocacy
www.patientadvocacy.org

FSIG – Fabry Support & Information Group
www.fabry.org

Genetic Alliance
www.geneticalliance.org

National Institute of Neurological Disorders and Stroke (NINDS)
www.ninds.nih.gov

National Organization for Rare Disorders (NORD)
www.raredisease.org

Fabry Websites Around the World

Canadian Fabry Association
www.fabrycanada.com

Canadian Organisation for Rare Disorders (CORD)
www.raredisorders.ca

CLIMB – Children Living With Inherited Metabolic Diseases
www.climb.org.uk

Fabry Disease Society U.K.
www.fabry.org.uk

Fabry Spain
www.fabry-spain.org

Fabry Support & Informatie Groep Nederland
www.fabry.nl

LDA – Lysosomal Diseases Australia
www.lda.org.au

Morbus Fabry (Germany)
www.fabry-selbsthilfegruppe.de

Nordic Fabry Website
www.fabry.dk

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Fabry Registry

First Symptoms to Diagnosis

Data from the Fabry Registry confirms the large gap between the average age of symptoms onset (10.5) and diagnosis of Fabry disease (28.5). To learn more about the importance of the Fabry Registry click here.

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