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.
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.
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