Fundraising Specialist

We are seeking an experienced Fundraising Specialist to develop and execute a diversified fundraising program dedicated to improving the lives of individuals and families affected by Barth syndrome, an ultra-rare disease affecting approximately 350 known individuals globally. We aim to raise funds to support scientific research, advance treatments and a cure, provide resources to affected families, and strengthen the global Barth syndrome community. The role combines strategic planning with hands-on execution across individual, corporate, institutional, government, and digital fundraising channels. Responsibilities • Demonstrated fundraising experience within nonprofits, rare diseases, healthcare, medical research, patient advocacy, or other mission-driven organizations. • Proven success securing funding from individuals, major donors, corporations, foundations, grantmakers, or government bodies. • Experience managing crowdfunding, peer-to-peer, or digital fundraising campaigns through GoFundMe or similar platforms. • Strong skills in grant research, proposal writing, donor communications, relationship management, and presentations. • Ability to translate complex medical or scientific information into clear, credible, and compelling donor messaging. • Resourceful and entrepreneurial approach to building support for a specialized cause with a small global patient population. • Develop and execute a diversified fundraising strategy across individual giving, major gifts, corporate partnerships, grants, sponsorships, and crowdfunding. • Identify, cultivate, and engage prospective donors, foundations, corporations, government funding bodies, and strategic partners. • Create fundraising narratives, cases for support, proposals, presentations, sponsorship packages, and donor communications. • Plan and manage digital fundraising campaigns through GoFundMe or similar fundraising platforms, email, social media, and other online channels. • Build donor stewardship programs that strengthen relationships, encourage recurring giving, and improve retention. • Establish fundraising targets, timelines, budgets, reporting processes, and performance metrics.