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
Blue Moon Curiosities are supporting BSUK by selling beautiful hand made cards, key rings, tote bags and running shirts. Please visit their site and place your order as a whopping 100% of the proceeds will come to BSUK!
Chelmsford Round Table is the local Round Table for the Doran family. The family reached out to ask for support towards the development of BSUK's new website.
We were delighted to receive a significant and generous donation of £500 which will help us deliver the website and benefit not only the Doran family but our community across the UK.
Thank you to Chelmsford Round Table for the hard work it does to support its local community and generated sufficient cash to support us.
Billericay Rotary Club supports BS UK - read the full report here.
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)
In March 2023, Jeans for Genes awarded BS UK a generous grant to create a peer-to-peer support network for young adults and adults with Barth syndrome!
A HUGE shout out to Barratt Homes Eastern Counties who raised an INCREDIBLE £42 000 for our charity!
Barth Syndrome UK co-funds important new research into neutropenia in Barth syndrome
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