Barth Syndrome Trust logo
Home
About Barth syndrome
Clinicians
Resources
NHS Service & Clinic
Get Involved
International
Join our Registry
In Memory
Useful Links
Research Grants
Donate
Our Shop
Contact us
A A A
SEARCH  

Saving lives through education, advances in treatment and finding a cure for Barth syndrome

Barth Syndrome Trust image

Barth Syndrome Trust image

 

About Barth Syndrome UK

Barth syndrome is a rare, often life-threatening genetic disorder that affects children, young people and adults.  Look at our logo and you’ll see a heart at its centre: this is because most of our children 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.

 

Please read more about our achievements to date here.

 

Barth Syndrome Trust graphic

Contact us

For information or a friendly chat...

 

Get in touch!

Barth Syndrome Trust graphic
Barth Syndrome Trust graphic
 
Barth Syndrome Trust graphic