Passion. Compassion. Excellence.
These are the common attributes of people who work at BSF.
BSF looks for talented people who want to make a real impact, who bring empathy to their work, who enjoy building strong work relationships, and who are eager to make a career of working to end suffering and loss of life from Barth syndrome. If you are looking for an exciting opportunity in a rare disease field, please reach out us to explore whether BSF could be your next big career move.
Open Positions
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The Health Policy and Advocacy will build and expand a growing advocacy program that directly impacts people
living with Barth syndrome. The manager will help shape policy, strengthen patient engagement, advance access to
care and treatments, and ensure the Barth syndrome community has a strong voice in decisions that affect their lives. They will lead execution of "Advocating for the Community," one of the five pillars of BSF's 2026–2028 Strategic Plan. This individual will leverage their knowledge of and existing relationships with congressional offices and federal health agencies to inform BSF's advocacy priorities, build and grow grassroots advocacy initiatives, train community members to become effective advocates, support regulatory and policy activities, and advance efforts to improve access to care, treatments, research, and support services for individuals living with Barth syndrome. They will have experience engaging with a variety of groups, including patients, families, caregivers, policymakers, and coalition partners.This position requires 5+ years of experience in federal advocacy or government relations, with direct professional experience in a congressional personal office, committee staff position, or federal health agency (FDA, NIH, or HRSA).
Please see the job description for more details.
