Research Programs Officer - Rare Disease Grants & Scientific Communications

• Conduct due diligence on grant proposals, including scientific merit, feasibility, and alignment with the Foundation’s mission, in collaboration with Scientific Advisory Board.
• Work with Foundation team members and advisors to develop and implement targeted request for proposals.
• Build and maintain strong relationships with grantees, offering technical assistance, strategic guidance, and connections to relevant partners.
• Monitor progress through milestone tracking, investigator meetings, and reporting; synthesize outcomes into actionable insights for stakeholders.

This role directly accelerates research and clinical trial opportunities for Sanfilippo syndrome, a fatal genetic disease in children, by managing grants and scientific communications that bring hope and measurable impact to patients and families worldwide.

• 5+ years of experience in scientific grantmaking, program management, or nonprofit sector work—preferably in pediatric health, biomedical research, or rare disease advocacy.
• Master’s Degree in a scientific, research and/or health related field (PhD preferred).
• Strong analytical skills to assess proposals and interpret research or program data.
• Exceptional relationship-building skills and excellent written/verbal communication, including public speaking and ability to translate complex information.

Mission-first culture, flexible remote work environment, comprehensive health/dental/vision coverage, generous PTO, opportunities to attend conferences. Salary range: $100,000 - $120,000.

Cure Sanfilippo Foundation accelerates scientific development and access to a cure for Sanfilippo syndrome, a rapidly degenerative and fatal genetic disease in children, through research funding, advocacy, and family support.