Barth Syndrome
Health Care in Pinetown

BSF does not endorse any drugs, tests, or treatments that we may report.

We are the only world-wide volunteer organization dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS). We started in 2000, after the first international conference held in Baltimore, MD (USA) where families from around the world met to discuss BTHS. As a result, we made a unanimous decision to work together to find a cure for this multi-system disorder. Our Foundation strives to accelerate progress through collaboration between families and scientists. Also, we provide several ways to keep up-to-date about advances in science and medicine. Grants have been provided to investigators around the world and have supported work on the underlying biochemistry and genetics of the disorder as well as the creation of animal models, collection of phenotypic data, and insights into disease mechanisms. All applications are reviewed by our world leading Scientific and Medical Advisory Board consisting of experts in various fields relevant to Barth syndrome. Our principal education event is our biennial international scientific, medical and family conference, which brings together the largest number of individuals interested in Barth syndrome. Our Family Services team is continually developing new informational resources in response to the needs of families, individuals, and professionals working with those affected by Barth syndrome. We work continuously to raise public awareness and generate additional support among individuals, community organizations of similitude, and the medical community. We also provide print publications and video coverage of our international scientific, medical and family conferences, and through our website we communicate globally. Barth Syndrome Foundation does not endorse any drugs, tests, or treatments that we may report. Saving lives through education, advances in treatment and finding a cure for Barth syndrome. Barth syndrome is a rare, often life-threatening genetic disorder that affects boys. Look at our logo and you’ll see a heart at its centre: this is because most of our boys have heart failure and a risk of sudden cardiac arrest. However, the heart at the centre is also a powerful symbol of who we are as an organisation: we are a strong, caring and positive force. So yes, Barth syndrome is a serious condition that strikes in many different ways but with your help, we know we will succeed in our mission. Your contribution today allows us to continue to pursue innovative, life-saving research, educate the public and patient community, and provide personalized support to individuals and families. There's a warm and welcoming community to help you live successfully with Barth syndrome. Doctors and scientists who conduct research on Barth syndrome frequently need to involve people living with this condition. Our success depends on the initiative of supporters like you. You can make a difference for the Barth syndrome community! Find out how you can join us in our fight for victory!