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The Bristol Barth Syndrome Service team is able to offer children with Barth Syndrome, and their families, the opportunity to come to an annual clinic. At this they will be able to meet healthcare professionals who specialise in the disease, as well as meeting with other families. Patients come from across the UK and Europe.

Barth Syndrome Clinic activities

Each family are offered an appointment with each of the specialists in the team. The professionals see patients and offer any advice and support around issues and questions that families may have.

These range from wanting to know about whether to give amino acid supplements, through giving G-CSF with the least amount of stress, to how they can help their child cope with peer pressure.

Feedback from patients and families is used by the medical professionals and Barth Syndrome Trust to constantly improve the clinic experience. Comments received following recent clinics are given here.