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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

 

Barth Family Info Day - March 2020, Black Country Living Museum

Affected families from all around the UK met for a fun, interactive and informative day, followed by bowling and dinner out together.

 

The venue and lunch were kindly funded by the specialist NHS Barth Syndrome Service.  Travel costs and the bowling were funded by Barth Syndrome UK.

 

Links to the PowerPoint presentations can be found here:

 

Dr Germaine Pierre: Introduction & Welcome

Dr Effie Chronopoulou: Overview and Treatments

Victoria Wilkins: Nutrition

Curtis Wadey: Exercise and CARDIOMAN trial

Joan Ward: NHS commissioning, the Patient Voice & Access to New Treatments

 

 

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