About The Lowe Syndrome Trust

The Lowe Syndrome Trust was founded in June 2000 as the only UK charity for the disease, raising funds to support vital research into this devastating disease which affects the Brain, Eyes, Kidneys, Bones and Muscles. Sadly leading to a short life expectancy. The charity is extremely small and voluntary, organised by the founder whose son was diagnosed with the disease 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 also supports families by way of medical booklet and advice and guidance.

Message from the Chair of the Lowe Syndrome Trust Scientific Advisory Board, Professor Robert Unwin

I am writing to you as Chairman of the Lowe Syndrome Trust’s Scientific Advisory Board (SAB). I wanted to highlight the work and success of this small charity founded by Lorraine Thomas in June 2000.

The research funded to date has been of high scientific quality and impact, and has brought together many researchers from different fields that would probably not have collaborated on studies of this rare disease without the catalyst and support of the Lowe Trust. I think it is true to say that the Trust has put Lowe research ‘on the map’ and attracted serious science and scientists to try to understand what is often a complex and devastating disease for those affected and their families.

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Donate & Gift Aid - Help Support The Lowe Syndrome Trust

The Lowe Syndrome Trust is registered as a charity with the Inland Revenue, Justgiving and CAF for tax deductable contributions. You can donate in several ways:

Read more about the charity and children who need our support

All donates are welcome, and we thank everyone for their support

Read more about the institutes who are working on research projects

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We have regular updates and news features to help you keep up to date

See celebrity trustees, radio shows and TV appearances raising awareness

We have raised lots of funding through some great events

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