Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Barth syndrome is a rare genetic condition that affects boys
Main symptoms:
- Heart muscle weakness (cardiomyopathy)
- Neutropenia (lack of white blood cells needed to fight bacterial infections)
- Fatigue and general muscle weakness
- Growth/feeding issues
The Barth Syndrome Trust is a well-established community of families, medical professionals, scientists, donors and volunteers with links to other affiliates all around the world. We provide the most comprehensive source of reliable and current information about this condition and we invite you to visit our pages to find the information you seek.
We are dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome - a sometimes fatal, often debilitating genetic disease.
Working together we are making a difference in the lives of children and their families. One day there will be a cure; please join us and help us make that day come sooner.
Joe's story
Joe spent a record 251 days attached to an artificial heart waiting for a transplant. See his story on YouTube.
Latest News
Next Bristol Barth Day specially for bereaved and carrier families: July 2013 (date TBC)
Next Barth Clinic Day: 3rd & 4th Oct 2013 with a Family Gathering on Sat 5th Oct 2013
Orphanet - Barth Syndrome
Comprehensive review article about Barth syndrome published with open access for all in Orphanet Journal of Rare Diseases. Barth syndrome. Orphanet Journal of Rare Diseases 2013, 8:23.
New Education Guide available for families and schools.
