Email via contact form: BST Email Contact Form
Telephone: 01794 518 785
Address: Barth Syndrome Trust, 1 The Vikings, Romsey, Hampshire SO51 5RG
Barthe Syndrome is a rare genetic disorder that mainly affects boys.
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.
- 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. Find out more on our website. https://www.barthsyndrome.org.uk/index.php
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Registered Charity No:1100835