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

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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

 

 

 

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Contact us

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

 

Get in touch!

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