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Job details

We are seeking an experienced Healthcare Fundraising Consultant 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

What you’ll do

Develop and execute a diversified fundraising program to support scientific research and families affected by Barth syndrome. This includes managing individual, corporate, institutional, and digital fundraising channels to secure funding and strengthen the global community.

Requirements

Proven experience in fundraising for nonprofits, healthcare, or rare diseases with a track record of securing funds from diverse sources. Candidates must be able to translate complex medical information into compelling donor messaging and manage digital campaigns.

Other relevant skills

Identified from the job description. Confirm important requirements above.

• Fundraising Strategy
• Grant Writing
• Donor Relationship Management
• Corporate Partnerships
• Digital Fundraising
• Crowdfunding
• Donor Stewardship
• Strategic Planning
• Proposal Writing
• Donor Communications
• Case for Support Development
• Performance Metrics

Job areas

• Healthcare
• Consulting
• Marketing
• Management & Leadership
• Social Services