Barth Syndrome Trust logo
Home
About Us
Clinicians
Families & Individuals
NHS Service & Clinic
Get Involved
International
Join our Registry
In Memory
Useful Links
Terms & Conditions
Legal & Policies
Research Grants
Donate
What's New
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

 

Family stories

Most families who have joined our group have told us that reading other families' stories was the thing that helped them most, especially in the early days.

 

Meet Ollie

 

Meet Alex

Alex

Meet Johan, 54 yrs old

Johan

 

Meet Alfie, 19 yrs old

Alfie

 

 

 

 

 

Helen's Story

Sarah and Dave's Story

A Grandmother's story

Allanna and Tommy’s story

 

 

 

Barth Syndrome Trust graphic

Contact us

We're happy to share our personal experience of living with Barth syndrome.

 

Get in touch!

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