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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

ALD Family Support Trust

a/k/a: ALD

Address

8 Morley House
320 Regent Street
London, W1B 3BB
United Kingdom

Phone

020-763-13336

Fax

020-763-13336

800 Number

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TDD

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Website

http://www.aldfst.org.uk

The ALD Family Support Trust (ALD) is a non-profit organization dedicated to furthering medical research into adrenoleukodystrophy (ALD); providing grants and allowances for the purposes of medical treatment and care of children with ALD; and educating the public about ALD. Adrenoleukodystrophy is a rare inherited metabolic disorder characterized by the loss of the protective fatty sheath around nerve fibers within the brain (cerebral demyelination) and progressive degeneration of the adrenal gland (adrenal atrophy), causing progressive mental deterioration, neuromuscular abnormalities and loss of the ability to speak, blindness, and life-threatening complications. Established in 1993 and consisting of approximately 57 members, the trust also has a support group and provides networking opportunities to parents. Educational materials include pamphlets and a regular newsletter.

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