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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.

 

Meet our families

 

Joes story

Watch our Awareness video and Joe's story on YouTube

Latest News

Call for poster abstracts re scientific &/or clinical aspects of Barth syndrome

Deadline: 15th Apr 2014
 

Next Barth Clinic: 8th-9th May 2014, with a Family Day on Sat 10th May

 

Watch our new Awareness video on YouTube

 

New Education Guide available for families and schools.

 

US Int. Conference: 23rd-28th June 2014, Clearwater, Florida

 

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.

 

 

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