Videos: Self Management of Rare Conditions
Managing Lowe Syndrome
Fiona Fisher shares her story of providing full time care and managing her son Jonathan's rare genetic condition; Lowe Syndrome:
Lowe Syndrome Trust:
Tel: 020 7794 8858
The Trust is a Registered Charity in England and Wales No. 1081241, established in 2000. It works to fund medical research into Lowe Syndrome, offers a listening ear to parents and has information available.
Lowe Syndrome Association:
Tel: 01383 620602
Email: (International Lowe Syndrome Association)
www.lowesyndrome.org (International Lowe Syndrome Association)
The Association is part of the International Lowe Syndrome Association based in the USA, established in 1982. It offers mutual support to affected families and aims to raise public awareness. It publishes a tri-annual newsletter and has information available. There are approximately 50 known cases in the UK. Group details last updated December 2010.
Fiona Fisher is also the LSA's UK contact and be reached directly by e-mail at: