Disease Information from NORD, National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders (NORD)

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ALD Family Support Trust
a/k/a: ALDFST

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

Phone: 020--76-31-3336
Fax: 020--76-31-3336
800 Number: --
TDD: --
Email Address: info@aldfst.org.uk

The ALD Family Support Trust (ALDFST) 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.

Website: http://www.aldfst.org.uk

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Last modified Wednesday, November 26, 2008