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Lowe syndrome
Is there support?
29 Gleneagles Drive
Penwortham
Preston
PR1 0JT
Tel: 01772 745070
e-mail: info@lowesyndrome.org (International Lowe Syndrome Association)
Web: http://www.lowesyndrome.org (International Lowe Syndrome Association)
The Association is part of the International Lowe Syndrome Association based in the USA and, established in 1982. It offers mutual support to affected families and aims to raise public awareness. It publishes a tri-annual newsletter 'On the Beam' and has information available, details on request. Worldwide there are around 515 members (about 253 affected families and 100 professionals). There are about 50 known cases in the UK.
Group details last confirmed February 2008.
77 West Heath Road
London
NW3 7TH
Tel: 020 8458 6791
e-mail: lowetrust@homechoice.co.uk
Web: http://www.lowetrust.com
The Lowe Syndrome Trust is a National Registered Charity No. 1081241, established in 2000. The Trusts works to fund medical research into Lowe Syndrome. It has a wide range of information on its web site.
Group details last confirmed July 2008.
As Lowe syndrome is a metabolic disease support and advice are also available from Climb (see entry Metabolic diseases).
Inheritance patterns and prenatal diagnosis
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