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Welcome!
What is Lowe Syndrome?
Lowe Syndrome is a condition from birth that affects the functions of the eyes, kidneys, brain and general development.
Contact
info@lowetrust.com
Charity Address
673 Finchley Road, London, NW2 2JP
" We hope this website will be a single source of information for Lowe Syndrome families. "
Information
Lowe Info Docs
April 2025
Update on Therapies for Lowe Syndrome
Several FDA/EMA approved drugs have now been identified to treat Lowe Syndrome, and pilot clinical trials are starting in Italy. Gene therapy research for Lowe Syndrome has been founded by a family in Denmark called Curelowe.com.
Information
UK Lowe Family Outreach 2025
Lowe Syndrome Trust is committed to reduce isolation of families affected by Lowe syndrome.
Information
UK Benefits and Social Services
People with Lowe Syndrome condition are likely to have learning difficulties and disabilities and will require part time or full time care as children and adults.
Information
Press Release: A New Study
Sheds Light on Brain Development Challenges in Lowe Syndrome
Oct 2024
Oct 2024 Lowe Medical Conference Perdue USA
The International Lowe Syndrome Symposium is being planned to take place at Purdue University in November 2024. The primary objective of this symposium is to convene an interdisciplinary and international community, including scientists, medical professionals, clinicians, Lowe Syndrome patients, their families, and relevant organizations.
May 2023
Lowe Symposium May 2023 in Tigem, Italy
The Lowe Syndrome charity was pleased to host an International Lowe Syndrome Symposium, which was held at the Telethon Institute of Genetics and Medicine (TIGEM) in Naples Italy 24th-25th May 2023 in partnership with the Gurdon Institute Dr Jenny Gallop lab, TIGEM, the LSA USA and others.
2023
Paul James Living with Lowes
Living with Lowe’s: Sign for Inclusion www.livingwithlowes.com/sign-for-inclusion.html.
Paul James is a Special Advisor and Represenative for the Lowe Syndrome Trust.
About
The Lowe Syndrome Trust
The Lowe Syndrome Trust (LST) was founded in June 2000 as the only UK charity for the condition, raising funds for vital medical research into this devastating condition which affects the Brain, Eyes, Kidneys, Bones and Muscles.
The charity founded by the Thomas family whose son Oscar was diagnosed with the condition at the age of 5. The charity has a voluntary Scientific Advisory Board of eminent Professors of Medicine who advise on all aspects of research and review all research proposals.
The charity is committed to improving quality of life for families who have Lowe syndrome, promoting their right to be included on a full and equal basis with others.