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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.

 

Meet our families

 

Joes story

Children in Need  - Meet Joe

 

Narrated by Martin Freeman (Hobbit, Sherlock)

Latest News

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.

 

Read more about this here. Thank you to everyone at Brentwood Rotary.

 

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.

 

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. 

 

Thank you to Chelmsford Round Table who have made a generous donation of £500 towards updating our website. 

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)

 

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