Saving lives through education, advances in treatments and finding a cure for Barth syndrome
Barth syndrome is a rare genetic condition that usually affects boys and men (though we do have girls within our group)
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
Barth Syndrome UK 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.
Latest News
Read our latest newsletter here.
Blue Moon Curiosities are supporting BSUK by selling beautiful hand made Christmas cards, with 100% of the proceeds donated to BSUK!
On Friday September 24th, Rotary Club of Brentwood held its monthly online Quiz Night and for September, made BSUK its beneficiary, donating £750 to BSUK.
BSUK is delighted and grateful to receive a grant of £7 500 from The Foyle Foundation.This type of grant is essential to maintaining BSUK’s existence and providing a base on which we can deliver our planned outcomes for our community.
Who knew taking part in a clinical trial could be so much fun?! Watch our CARDIOMAN video created by the talented Oliver Baxter-Smith. (Sign up for free access to Vimeo to watch)
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