Barth Syndrome Trust

The Barth Syndrome Trust, a UK registered charity, is working to raise awareness, support affected families and find treatments and a cure for Barth syndrome. We are all unpaid volunteers and our work is supported solely by charitable donations. Please join our worldwide community of affected families, clinicians, researchers, volunteers and donors.

Barth syndrome is a rare, life-impacting and life-threatening genetic condition which affects males. Boys with Barth syndrome are often affected in the following ways:

  • A weak heart which does not pump properly often requiring a range of medications and/or a heart transplant (cardiomyopathy)
  • A weak immune system with numerous infections (neutropenia)
  • Severe muscle weakness
  • Growth delay
  • Exercise intolerance
  • Severe fatigue

Donations go directly towards funding research which has enabled earlier and faster diagnosis and greater understanding of the disorder. We assist families to attend a specialised clinic where they receive expert care. Family Fun Days are very popular, allowing families to meet and children to play after the stress and strain of a busy hospital clinic. These are some of the things we are doing to help; however we still have a long way to go to ensure a future for all our boys and young men.