FDN — FOUNDATION / NON-PROFIT

BSF Family Services & Conference Support

Barth Syndrome Foundation

Award

Support services; subsidized conference registration + limited scholarships

Deadline

Services rolling; next conference 2028

Award type

In-kind support

Focus

Patient & family support

Family services include information and guidance, one-on-one emotional support, private family communities, and the membership registry. The biennial International Scientific, Medical & Family Conference offers heavily subsidised family registration ($50–150 per person in 2026), free Camp Barth childcare during sessions, and a limited number of family scholarships each cycle.

Why it's in this index

Barth-specific by design. The 2026 conference ran July 19–26; the next is in 2028, with scholarship details published per cycle.

Who can apply

Families affected by Barth syndrome. Barth Syndrome UK offers free membership, private groups, and weekly online meet-ups for UK families.

How to apply

Contact BSF through barthsyndrome.org; watch barthsyndromeconference.org and the BSF newsletter for the next conference cycle.

Links & downloads

Contact BSF ↗Conference site ↗Barth Syndrome UK ↗