Fabry Disease Uk Support

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Fabry Disease Community Announcements

    https://www.fabrydisease.org/
    As an IRS 501(c)(3) non-profit support organization we rely on donations from organizations and individuals to provide meaningful support and assistance programs to people/families with Fabry disease. Please give generously! Thank you to our corporate and foundation sponsors as well as our many individual donors.

Fabry Support & Information Group

    http://www.fabry.org/
    Information about the group and this disease. Join the group free of charge and receive a newsletter.

Fabry Disease: Causes, Symptoms, and Treatment

    https://www.webmd.com/a-to-z-guides/fabry-disease
    WebMD looks at the causes, symptoms, and treatment of Fabry disease, an inherited condition that brings on a variety of symptoms, including pain in the hands and feet.

Fabry disease Contact

    https://contact.org.uk/advice-and-support/medical-information/conditions/f/fabry-disease/
    Fabry disease is inherited in an X-linked manner. Affected families should be referred to a genetics centre for information and support. Prenatal diagnosis Prenatal testing is available for affected families by either chorionic villus sampling (CVS) or amniocentesis.

Fabry disease - Genetics Home Reference - NIH

    https://ghr.nlm.nih.gov/condition/fabry-disease
    Oct 01, 2019 · Fabry disease affects an estimated 1 in 40,000 to 60,000 males. This disorder also occurs in females, although the prevalence is unknown. Milder, late-onset forms of the disorder are probably more common than the classic, severe form.

Fabry Disease - NORD (National Organization for Rare ...

    https://rarediseases.org/rare-diseases/fabry-disease/
    Fabry disease is a rare inherited disorder of glycosphingolipid (fat) metabolism resulting from the absent or markedly deficient activity of the lysosomal enzyme, α-galactosidase A (α-Gal A). This disorder belongs to a group of diseases known as lysosomal storage disorders.

Fabry International Network

    http://www.fabrynetwork.org/
    Welcome to the Fabry International Network . The Fabry International Network mission is to be a global, independent network of Fabry Patient Organisations whose purpose is to collaborate, communicate and promote best practices to support those affected by Fabry disease.

Role of patient support groups in lysosomal storage diseases

    https://www.ncbi.nlm.nih.gov/books/NBK11585/
    In the beginning. Although the first lysosomal storage diseases (LSDs) were described in the late 19th and early 20th centuries – Fabry disease in 1898, Gaucher disease in 1882 and mucopolysaccharidosis (MPS) type I (Hurler disease) in 1919 – the founding of patient support organizations is principally a phenomenon of the second half of the 20th century and, in particular, the past 25 years.



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