Saving lives through education, advances in treatment and finding a cure for Barth syndrome
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 Effie Chronopoulou: Overview and Treatments
Joan Ward: NHS commissioning, the Patient Voice & Access to New Treatments