Job Description

We are looking for an experienced Grant Writer (Freelance, Remote) to support a nonprofit organization dedicated to improving the lives of individuals and families affected by Barth syndrome, an ultra-rare disease. The organization raises funds to advance scientific research and treatments, support affected individuals and families, and strengthen the global Barth syndrome community.

The ideal candidate has a strong track record of researching funding opportunities and developing compelling, successful grant proposals for nonprofit, healthcare, rare disease, medical research, or patient advocacy organizations. Through strategic prospect research and high-quality proposal development, this role will help strengthen the organization's institutional funding pipeline and clearly communicate its impact, priorities, and funding needs to prospective funders.

Responsibilities

• Research and identify relevant foundation, corporate, government, and institutional grant opportunities.
• Develop and submit compelling grant proposals, letters of inquiry, applications, and supporting materials.
• Collaborate with internal stakeholders to gather research, program, impact, financial, and organisational information needed for applications.
• Maintain grant calendars and track deadlines, submissions, reporting requirements, and funding outcomes.
• Support grant reporting, funder communications, and proposal revisions as needed.

Requirements

• Strong track record of developing successful grant proposals and securing institutional funding.
• Significant grant writing and fundraising experience within nonprofit, healthcare, medical research, rare disease, patient advocacy, or related sectors.
• Strong understanding of grant prospecting, funder research, proposal strategy, and institutional fundraising.
• Strong grant research, proposal writing, storytelling, editing, and communication skills.
• Highly organised and able to manage multiple applications and deadlines independently.