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

Requirements

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