Saving lives through education, advances in treatment and finding a cure for Barth syndrome
About Barth Syndrome UK
Barth syndrome is a rare, often life-threatening genetic disorder that affects children, young people and adults. Look at our logo and you’ll see a heart at its centre: this is because most of our children 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.
The swirl around the heart encompasses the many symptoms which are caused by Barth syndrome – immune system problems, muscle weakness, extreme and debilitating fatigue, growth delay and feeding problems. But again, our swirl means more to us than just a collection of symptoms – for us it symbolizes unity, collaboration and inclusion. 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.
Please read more about our achievements to date here.
