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

Barth Syndrome Trust image

Barth Syndrome Trust image

 

Join us

When you’re ready, please contact us either by phone or by email as there are a wealth of services and information that are available to members only and that are not on any website. Examples include:

  • Private, confidential email forum (the Barth Family Listserv) where families and doctors have posted many questions and observations over the years – this is an invaluable resource for families and physicians alike
  • Newsletter twice a year
  • Access to Specialised Clinics and Family Days
  • The opportunity to add your experiences to our global registry so that we can better study this rare condition to help us find treatments and a cure
  • A friendly voice at the end of the phone to talk things over

Please contact us for further information. Membership is free and you are welcome at any time to choose the level of information and support you need without any pressure.

 

A personal message from Michaela Damin, mother and Chairperson

 

I hope that you’ll get in touch with us soon. The rarity of this condition means that everyone has some vital information that can be shared; information that may one day lead to the breakthrough we seek.

 

As a mother of a boy with Barth syndrome, I know that one of the main reasons he’s doing so well today is because I have access to this international group of families and doctors who are there to answer my questions and help me take better care of my child. It took me a while before I was ready to reach out and talk to other parents, mostly because I was afraid of what I might hear. That was back when my son was a toddler. 

 

Now he’s a teenager and we still regularly use the email listserv. Our son is enrolled in the International Registry and feels a great sense of satisfaction in playing an active part in helping research. He has made lifelong friends with other boys with Barth syndrome who ”just get it” and our whole family always looks forward to the Clinic and Family Days where we can combine expert medical care with a sense of friendship and fun.

 

We’ve worked hard to create a new model of care for our boys, one where the patient and the family stand at the centre and where quality of life and holistic care are valued. 

 

Welcome to our group.

 

Michaela Damin

 

 

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Join our group on your own terms with as little or as much contact as you prefer.

 

We need each other - it's only by sharing our knowledge that we will one day find a cure for all our boys and young men.

 

Please contact us

Barth Syndrome Trust graphic
Barth Syndrome Trust graphic

"Our son is often treated as a cardiac baby, instead of a baby with Barth syndrome. Having others who both understand and can pass on hints and tips on living with Barth has been amazing. It’s also been reassuring to see older boys with the syndrome."

 
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