Executive Director, State Government Affairs

Position Purpose:

The Executive Director, State Government Affairs will lead Stoke Therapeutics’ state-level government affairs strategy across priority U.S. states, advancing policy environments that support people living with Dravet syndrome and other severe genetic diseases, access to innovative RNA medicines, and potential future access to zorevunersen, if approved. The role will focus on state legislative, regulatory, Medicaid, rare disease, genetic testing, and access policies.

Reporting to the Vice President, Patient Advocacy and Policy, this leader will serve as a senior strategic partner across Patient Advocacy, Policy, Medical Affairs, Market Access, Regulatory, Compliance, and Communications. The Executive Director will anticipate external risks and opportunities, shape policy solutions, and ensure that state engagement reflects patient and caregiver experience while aligning with Stoke’s business objectives.

Key Responsibilities:

• Develop and execute a comprehensive state government affairs strategy and priority-state plans aligned with Stoke’s patient advocacy, policy, commercial, medical, regulatory, market access, compliance, and communications objectives.
• Monitor, analyze, and influence state legislative, executive, regulatory, and political developments affecting rare disease, Dravet syndrome, genetic testing, pediatric neurology, Medicaid, commercial insurance, and access to innovative therapies; provide timely, actionable guidance on risks and opportunities.
• Advance policy readiness for potential future access to zorevunersen, if approved, including coverage pathways, medical and pharmacy benefit considerations, utilization management, site of care, continuity of coverage, and recognition of disease-modifying value.
• Shape Medicaid and pediatric rare disease policy, including prior authorization, medical necessity criteria, EPSDT, managed care practices, financing, value assessment, coverage continuity, and state implementation of federal healthcare changes such as H.R.
• Promote policies that reduce barriers to diagnosis and care by expanding genetic screening, testing and access to genetic counselors.
• Build and maintain trusted relationships with governors’ offices, state legislators, public health officials, patient organizations, rare disease coalitions, trade associations, and other key stakeholders; serve as a senior Stoke representative in external forums.
• Design and execute lobbying and advocacy campaigns in targeted states, including direct engagement, testimony, comment letters, policy briefs, site visits, legislative briefings, stakeholder roundtables, and coalition activation.
• Partner with Patient Advocacy leadership to ensure policy engagement incorporates patient and caregiver perspectives and reinforces patient organization legislative advocacy efforts.
• Manage external consultants, lobbyists, coalition partners, budgets, reporting, dashboards, and performance metrics to ensure alignment, compliance, accountability, and measurable outcomes.
• Coordinate with federal government affairs as needed, including engagement with Members of Congress, executive branch officials, and federal agencies, while overseeing applicable political engagement and compliance with lobbying, ethics, gift, and campaign finance requirements.

Required Skills & Experience: 

• Bachelor’s degree required; advanced degree in public policy, public health, law, political science, business, health administration, or a related field preferred.
• 12+ years of progressively responsible experience in government affairs, public policy, lobbying, healthcare policy, patient advocacy policy, or related roles, with significant state government affairs experience.
• Biotechnology, pharmaceutical, rare disease, pediatric specialty care, neurology, genetic medicine, RNA therapeutics, or advanced therapy experience strongly preferred.
• Demonstrated success developing and executing multistate legislative, regulatory, and lobbying strategies in complex healthcare environments.
• Deep knowledge of state Medicaid and managed care, commercial insurance, pediatric coverage, EPSDT, prior authorization, utilization management, genetic testing, rare disease access, and coverage considerations for innovative therapies.
• Direct experience partnering with Market Access stakeholders with state Medicaid agencies and analyzing state implementation of federal healthcare policy changes affecting eligibility, financing, coverage, and administrative requirements.
• Established relationships with state policymakers, government affairs professionals, patient advocacy organizations, trade associations, and external consultants.
• Proven ability to develop pragmatic policy solutions, influence legislative, executive, and regulatory outcomes, and manage budgets, consultants, political programs, coalitions, and cross-functional initiatives.
• Strong knowledge of lobbying, campaign finance, ethics, and corporate compliance requirements.
• Exceptional communication and collaboration skills, including the ability to brief executives, testify before public bodies, and translate complex scientific, clinical, policy, and access issues for diverse stakeholders.
• Sound judgment, integrity, discretion, empathy, and resilience in a fast-paced, mission-driven, highly matrixed biotechnology environment.
• Willingness and ability to travel up to 40%, including regular travel to priority state capitols, stakeholder meetings, and Washington, D.C.

Location(s):

Stoke is located in Bedford, MA, and will be moving to a new location in Waltham, MA by the end of 2026. This position is a hybrid role.

Travel:

This position will require approximately 30-40% travel.

Compensation & Benefits:

At Stoke Therapeutics, we are committed to offering a comprehensive, competitive and thoughtfully designed total rewards program.

The anticipated salary range for this role is $278,000 - $322,000. The final offer will be determined based on a variety of factors, including role scope, experience and qualifications, education, market benchmarks, internal equity, and geographic location. In addition to base salary, Stoke offers an annual bonus and equity participation.

Our benefits package includes medical, dental and vision insurance; life, long- and short-term disability insurance; paid parental leave; a 401K plan with company match, unlimited vacation time, tuition assistance and participation in our Employee Stock Purchase Program (ESPP).