Senior Director of Scientific & Medical Affairs (Part-Time, Remote)

Senior Director of Scientific & Medical Affairs (Part-Time, Remote) Project Alive | Remote, United States | 0.5 FTE (~20 hours/week) | $75,000/year | Anticipated start January 2027 About the role Project Alive is a nonprofit dedicated to finding a cure for Hunter syndrome (MPS II) and improving the lives of affected individuals and families. We’re seeking our first Senior Director of Scientific & Medical Affairs to lead our growing scientific portfolio, including our MPS II Research Roadmap, research grant program, regulatory and newborn screening advocacy, scientific publications, and payer education efforts. This is a senior leadership role reporting to our President & Executive Director. It’s designed as a flexible, part-time position, and we welcome candidates who wish to maintain clinical practice, academic appointments, research, or other professional work. You won’t be expected to be the expert on every aspect of MPS II. Instead, you’ll bring your own scientific or clinical expertise while engaging our Clinical & Scientific Advisory Board (CSAB) and broader network, convening the right experts and turning their insight into strategy and action. What you’ll do Lead Project Alive’s scientific and research strategy and serve as a trusted advisor to leadership and the Board Serve as primary staff liaison to the CSAB, convening experts and translating recommendations into action Lead our research grantmaking program, including calls for proposals, peer review, and oversight of funded research Guide scientific publications, white papers, and consensus initiatives Provide scientific leadership for regulatory engagement (including FDA), newborn screening advocacy, and payer education Represent Project Alive with researchers, clinicians, industry, regulators, and partner organizations Help translate complex research into clear, accurate information for families Who we’re looking for Advanced clinical or scientific degree (MD, DO, PhD, PharmD) or equivalent training and experience Expertise relevant to rare disease research, medicine, or therapeutic development Ability to synthesize complex evidence and differing expert views into clear recommendations Experience collaborating with clinicians, researchers, patients and caregivers, industry, or government Strong communication skills, including with non-scientific audiences A commitment to patient-centered research Experience in MPS II, lysosomal storage disorders, genetics, metabolic medicine, or pediatrics is a strong plus, as is experience with grantmaking, regulatory affairs, newborn screening, or patient advocacy organizations. Lived experience with MPS II or another rare disease is valued and may provide important perspective in carrying out this role but is not required. Flexibility and compensation The salary is $75,000 annually for approximately 20 hours per week, with flexible scheduling that can flex around grant cycles, conferences, and other priorities. Benefits may be available or negotiated. Approved travel and professional expenses are covered, and occasional travel is required. Outside professional activities are welcome, subject to our conflict-of-interest policies. This job is anticipated to start in January 2027. #J-18808-Ljbffr Project Alive