Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Our Vision: A world in which people with Barth live, and live well.
Our Mission: Saving lives through education, advances in treatment and finding a cure.
Our goal is ambitious – we’re searching for 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.
We work on many levels at the same time:
- Getting more children correctly diagnosed so that they can access quality care
- Supporting families and providing them with information to help them choose the right path for them
- Looking at the whole child and the whole family and not just a collection of symptoms
- 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 November 2003. In 2019, the charity name was changed to Barth Syndrome UK and we are the leading charity for Barth syndrome in the UK. All our staff are volunteers. We keep administrative and fundraising expenses to a minimum; so if you give us a donation, we’ll spend it the way you envisioned.
For that reason, we believe in working together with like-minded people. Pooling resources, getting people talking to each other and learning from each other. We are affiliated to the Barth Syndrome Foundation in the USA and there are other affiliates in Canada and Europe. We share resources where practical so that every donation of time or money can be used to its full potential.
We realise that people, healthcare and education systems differ. 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.
"There is only the mission” is often a statement you’ll hear at any of our meetings. Everything we do is centred around our goal and if it doesn’t help our children, young people and adults, then we won’t do it. It’s as simple as that.