Careers at Project Alive
Our team is small, which means every person here shapes what we do. We fund and guide research through our grant program and MPS II Research Roadmap, work alongside a Clinical & Scientific Advisory Board of leading clinicians and researchers, advocate with regulators and policymakers, and support families navigating Hunter syndrome every day. We value curiosity, collaboration, and people who care deeply about the families we serve.
We’re currently hiring for the following position. We offer flexible, remote roles designed to attract experienced professionals who want their work to make a meaningful difference.
Open Positions
Senior Director of Scientific & Medical Affairs
Part-time (~20 hrs/week) | Remote, U.S. | $75,000/year | Anticipated start: January 2027
Full job description
Position summary
The Senior Director of Scientific & Medical Affairs provides strategic scientific and medical leadership across Project Alive's research, advocacy, education, and community initiatives. As a member of our senior leadership team, the Senior Director helps ensure that our priorities, investments, positions, and programs are informed by rigorous science, appropriate clinical expertise, and the needs of people affected by Hunter syndrome.
Hunter syndrome is a complex, multisystem disease, and no single person can be an expert in every aspect of its science, clinical management, therapeutic development, and policy. The Senior Director is not expected to be the sole subject-matter expert. Instead, they will draw on their own expertise while engaging our Clinical & Scientific Advisory Board (CSAB), researchers, clinicians, regulatory experts, and others when specialized knowledge is needed.
The successful candidate will be a credible scientific or clinical leader who can convene experts, ask the right questions, synthesize differing perspectives, and translate scientific and medical information into strategy and action.
Scientific and medical leadership
- Provide scientific and medical leadership across research, advocacy, education, and strategic initiatives.
- Serve as a trusted advisor to the President & Executive Director, senior leadership, and Board of Directors.
- Help establish and advance Project Alive's long-term scientific and research strategy.
- Monitor developments across the MPS II research, clinical, therapeutic, and regulatory landscapes.
- Synthesize evidence and expert perspectives, including where uncertainty or differing opinions exist.
Clinical & Scientific Advisory Board
- Serve as primary staff liaison to the CSAB and partner with its leadership on priorities and agendas.
- Convene CSAB members, external specialists, and working groups around specific questions.
- Identify gaps in expertise and support the recruitment and development of advisors.
Research strategy and grantmaking
- Lead our research grant program, including calls for proposals, criteria, and peer review.
- Translate the MPS II Research Roadmap and community priorities into funding initiatives.
- Coordinate scientific review with appropriate conflict-of-interest safeguards.
- Support monitoring of funded research and maintain relationships with investigators.
Scientific projects and publications
- Lead or oversee consensus initiatives, peer-reviewed publications, white papers, and educational resources.
- Serve as an author or scientific contributor when appropriate.
- Ensure materials accurately represent evidence, uncertainty, and expert perspectives.
Advocacy, policy, and regulatory affairs
- Lead or support evidence-based advocacy for MPS II newborn screening.
- Support engagement with the FDA and other regulators on therapeutic development and access.
- Provide or coordinate expertise on trial design, endpoints, biomarkers, and treatment access.
- Contribute to payer education, comment letters, position statements, and policy materials.
External relations
- Represent Project Alive with industry, academic researchers, clinicians, regulators, and advocacy organizations.
- Represent Project Alive at scientific and medical conferences.
- Identify collaborations that advance our priorities while maintaining organizational independence.
Community education
- Translate emerging research into clear, useful information for families.
- Participate in educational programs, webinars, and community events.
- Provide or coordinate scientific review of educational resources.
The Senior Director does not provide individualized medical care or establish physician-patient relationships through Project Alive.
Organizational leadership
- Partner with the President & Executive Director on strategy and bring scientific perspective to major decisions.
- Help set annual scientific priorities, goals, and measures of impact.
- Support fundraising and grant development with scientific expertise.
- Participate in Board meetings as appropriate.
Required
- Advanced clinical or scientific degree (MD, DO, PhD, PharmD) or an equivalent combination of training and experience.
- Expertise relevant to rare disease research, medicine, therapeutic development, or a related field.
- Ability to critically evaluate and communicate complex scientific and medical information.
- Ability to recognize the limits of one's own expertise and engage the right experts.
- Experience collaborating with clinicians, researchers, patients and caregivers, advocacy organizations, industry, or government.
- Strong written and verbal communication, including with non-scientific audiences.
- Proven ability to move complex, multi-stakeholder initiatives to completion.
- Commitment to patient-centered research and engagement of families affected by rare disease.
Preferred
- Doctoral-level scientific or clinical training.
- Expertise in MPS II, lysosomal storage disorders, genetics, pediatrics, neurology, metabolic medicine, or translational research.
- Experience with clinical research, publications, grantmaking, regulatory affairs, newborn screening, or health policy.
- Experience working with or advising patient advocacy organizations.
- Familiarity with the MPS II therapeutic development and research landscape.
Lived experience
We value lived experience with MPS II or another rare disease, whether as an individual, parent, caregiver, family member, clinician, researcher, or advocate. It is not required for the position.
This role is anticipated at 0.5 FTE (approximately 20 hours per week), with a salary of $75,000 per year. Hours may flex around grant cycles, conferences, regulatory meetings, and other priorities while averaging the agreed FTE over time.
We welcome candidates who wish to maintain clinical practice, academic appointments, research, or other professional commitments, provided they don't materially interfere with the role and any conflicts of interest are disclosed and managed under our policies.
Benefits may be available or negotiated as part of the overall package. Approved travel and professional expenses are covered. Occasional travel is required for conferences, Project Alive events, regulatory engagements, and research meetings.
- Project Alive has a clear, credible, and actionable scientific strategy aligned with community priorities.
- Research investments are guided by rigorous, multidisciplinary review and directed toward unmet needs.
- The CSAB is actively and strategically engaged as a source of expertise.
- Leadership and the Board have timely access to the scientific and medical expertise they need.
- Advocacy and policy positions are grounded in credible evidence.
- Complex scientific developments reach the Hunter syndrome community accurately and accessibly.
- Project Alive is increasingly recognized as a credible, collaborative partner in the global MPS II scientific community.
November 14, 2026
Cure Within Reach Gala
Join us for an unforgettable evening at the Cure Within Reach Gala, a premier event dedicated to bringing hope to the Hunter syndrome community. Hosted at the beautiful Georgia Aquarium in Atlanta, GA.