Our Vision & Mission

Man with Barth Syndrome

Our Vision: A world in which people with Barth syndrome live, and live well.

Our Mission: Saving lives through education, advances in treatments and finding a cure for Barth syndrome.

Our goal is ambitious – we’re searching for effective treatments and, one day, a cure for Barth syndrome and we plan to keep making the most out of what life has to offer us until that day comes.

What we offer families:

  • Help with accurate diagnosis and access to expert care
  • Support and information
  • Financial help with travel and meal costs to attend specialist clinics in Bristol
  • Funding research into new ways to treat Barth syndrome now
  • Funding research into long term projects in our search for a cure

Our group was started in 2003 as Barth Syndrome Trust (BST). In 2019 we changed our name to Barth Syndrome UK. We are the only charity for Barth syndrome in the UK. We keep administrative and fundraising expenses to a minimum; so if you give us a donation, we’ll spend it the way you envisioned.

Joining Forces for a Brighter Future

We believe in working together with like-minded people.  Pooling resources, getting people talking to each other and learning from each other helps us move forward faster.  We actively support the NHS Specialist Service for Barth Syndrome in Bristol and we also work closely with the Barth Syndrome Foundation in the USA and other Barth syndrome patient groups in Canada and Europe.  We share resources where practical so that every donation of time or money can be used to its full potential.

Local Knowledge

Customs, healthcare and education systems differ in different regions. What works in one country may not work in another. Much of what we do is local, personal and individual. We have information about how to navigate through the National Health System (NHS), the UK educational and social benefits systems. If we don’t know the answer to your question, we’ll find someone who does.