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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.