About Barth Syndrome UK

Man with Barth Syndrome

We are the only charity in the UK dedicated to helping those with Barth syndrome. Set up in 2003 as the Barth Syndrome Trust (Charity Number 1100835), we changed our name to Barth Syndrome UK in 2019. However our vision and mission remain unchanged to this day.

We are registered as a with the Charity Commission of England and Wales (Charity Number 1181830) as a Charitable Incorporated Organisation (CIO).

Our affected families are at the heart of everything we do: from one-on-one support to searching for a cure. Our dedicated and expert Board of Trustees and our Chief Executive work together to make sure that every donation is carefully stewarded and spent in the pursuit of our stated objectives as a charity.

Barth Syndrome children in a hospital

Joining forces for a brighter future

We believe in working together with like-minded people to catalyse change. Pooling resources, getting people talking to each other and learning from each other helps us move forward faster.

We are affiliated to the Barth Syndrome Foundation in the USA and we also work closely with the other Barth syndrome patient groups in Canada and Europe.  We also actively support the NHS Specialist Service for Barth Syndrome in Bristol.

We share resources where practical so that every donation of time or money can be used to its full potential. We might be an ultra-rare disease and a small community but we have an impressive track record of achieving big things.

Case for support

Please read more about our achievements in our Case for Support.