Research Programs Officer - Rare Disease Grants & Scientific Communications

Our Mission

Cure Sanfilippo Foundation’s mission is to accelerate scientific development and access to a cure or therapeutic options for all affected by Sanfilippo syndrome, drive advocacy to improve care and outcomes, and empower families with information, guidance, and support to navigate the journey. Sanfilippo syndrome is a rapidly degenerative and fatal genetic disease in children, currently with no approved cure or treatment options. Over the past 12 years, Cure Sanfilippo has grown to become the lead funder of research and clinical trial opportunities for patients with Sanfilippo syndrome.

We are hiring a Research Programs Officer – Rare Disease Grants & Scientific Communications. Each project Cure Sanfilippo Foundation supports represents a step toward groundbreaking research, improved patient care, and stronger advocacy for communities often overlooked. We believe in funding with purpose—supporting initiatives that bring hope, innovation, and measurable impact to patients and families worldwide.

The Impact You'll Make

As our Research Programs Officer, you will be a bridge between visionary ideas and real-world change. Your work will directly impact the advancement of critical research programs and communications helping to shape the future of this rare disease treatment landscape, education and advocacy. You’ll oversee our portfolio of grants and projects, ensuring that each deliver on its promise to advance key research aims and learnings are communicated effectively.

What You Will Do

• 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 and learnings into clear, actionable insights for the Board of Directors and stakeholders.
• Stay informed on emerging trends, research breakthroughs, and policy developments in the rare disease space to inform funding strategies. Develop expertise in the disease landscape.
• Collaborate with communications staff to share scientific updates and program impact with the broader community.
• Community outreach could include engagement with policy makers, medical professionals, families, and the public. This may include networking meetings, one-on-one interactions, and speaking to groups.

What You Will Bring

• 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, with the ability to engage positively and effectively across stakeholders (scientists, advocates, and patient families).
• Excellent written and verbal communication skills, including the ability to translate complex information into accessible language.
• Public Speaking experience and the ability to communicate scientific and disease related topics in line with the mission of the organization.
• A proactive, solutions-oriented mindset and the ability to manage multiple projects simultaneously.
• Familiarity with grant management software and reporting tools is a plus.

Why You Will Love It Here

• Join a highly motivated team of passionate change-makers!
• Foundation with a decade+ track record of delivering meaningful impact in research advancements and the drug development landscape, increasing the number of clinical trial opportunities and use of patient centered outcomes, and supporting families.
• Mission-first culture where your work directly impacts lives.
• Flexible, remote work environment.
• Comprehensive health, dental, and vision coverage, plus generous PTO.
• Opportunities to attend conferences and connect with global leaders in the field.

Compensation

The salary range for this role is $100,000 - $120,000. Final compensation is dependent on the candidate's location, skills, and experience.

Join Us

If you’re ready to help turn bold ideas into life-changing outcomes, please apply and send us your resume and cover letter. Applications received without a cover letter will not be considered.

Let’s make a difference—together!

Equal Opportunity

CSF provides equal employment opportunities to all employees and applicants for employment and prohibits discrimination and harassment of any type without regard to race, color, creed, religion, national origin, ethnicity, ancestry, sex, sexual orientation, gender identity, age, medical condition, physical or mental disability, genetic information, pregnancy, veteran status, marital status, familial status, source of income status, domestic or sexual abuse victim status or any other category protected by applicable federal, state or local law in any employment-related decision, including recruitment, hiring, compensation, training, promotion, demotion, transfer, layoff, termination and all other terms and conditions of employment.

Medical

Dental

Vision

401K

Vacation and Sick Leave