Barth Syndrome UK
Who we are
Make a difference by supporting Barth Syndrome UK - the only charity in the UK dedicated to finding a treatment, and one day a cure, for this rare condition.
Barth syndrome affects mostly boys (though we do know of girls affected by it too)and it is a complex and life threatening genetic condition that affects your heart, your immune system and your growth. Children and adults with Barth syndrome often struggle with extreme fatigue, sudden heart arrhythmias and recurring infections.
We are a caring community dedicated to ending the isolation that comes with being diagnosed with a very rare disease. As parents and friends of these special young people, we raise the vital funds needed to stimulate research and clinical trials. Life is all about living and we believe that these children deserve a chance to have fun so we organise National Family Days where families can meet outside a hospital environment. Please help us raise awareness of Barth syndrome so that families can be diagnosed more accurately and helped when they need it the most.
As an active and totally voluntary organisation, all of your contribution and support will directly benefit the charity.