Fundraising Consultant - Rare Disease Nonprofit

About the Role

We are looking for a seasoned Fundraising Consultant to design and implement a multifaceted fundraising program aimed at enhancing the quality of life for individuals and families impacted by Barth syndrome, a rare condition with around 350 identified patients worldwide. The role is centered on generating funds to support research, treatment development, family resources, and community building within this rare disease space.

Responsibilities

• Develop and implement a comprehensive fundraising strategy incorporating individual donors, major gifts, corporate collaborations, institutional grants, sponsorships, and digital crowdfunding initiatives.
• Seek out, nurture, and engage potential supporters including donors, foundations, corporations, governmental agencies, and strategic allies.
• Create compelling fundraising materials such as narratives, cases for support, grant proposals, presentations, sponsorship packages, and communications for donors.
• Oversee and execute digital fundraising campaigns using platforms like GoFundMe, alongside email marketing, social media, and other online channels to maximize reach.
• Establish donor stewardship systems to deepen supporter relationships, encourage repeated contributions, and enhance donor retention.
• Set clear fundraising goals, timelines, budgets, and implement reporting processes along with performance tracking metrics to measure success.

Requirements

• Proven background in fundraising within nonprofit sectors, particularly related to rare diseases, healthcare, medical research, patient advocacy, or other mission-driven organizations.
• Successful track record in securing funds from diverse sources including individuals, major benefactors, corporations, foundations, grant agencies, and government bodies.
• Experience managing digital fundraising campaigns, including crowdfunding and peer-to-peer models, using tools like GoFundMe or similar.
• Strong proficiency in grant research, crafting proposals, donor communications, relationship building, and delivering presentations.
• Capability to translate complex scientific or medical information into understandable, credible, and persuasive messaging for donors.
• Entrepreneurial spirit and resourcefulness in developing support for a highly specialized cause with a limited global patient base.