Executive Director, Patient Advocacy & Engagement

Stoke Therapeutics; Bedford (MA); On-site; USD 296,000 - 311,000; Full time

Job summary

Stoke Therapeutics in Bedford, MA is seeking an Executive Director, Patient Advocacy & Engagement to build and execute strategic advocacy initiatives for Dravet syndrome, ADOA, and Syngap1 programs across the product lifecycle. This role partners with Medical Affairs, Corporate Communications, and Clinical Operations to ensure patient voices influence programming, trials, and patient access, while leading a high-performing team.

The position focuses on U.S.

Qualifications

• Bachelor’s degree in a health-related field or related area.
• 12+ years of professional patient advocacy experience in biotech/pharma.
• Experience with rare diseases, regulatory milestones, and commercial-stage activities.
• Proven ability to build and lead advocate programs and partnerships.

Responsibilities

• Serve as liaison between company and patient community; maintain trusted relationships and timely responses.
• Foster connections between employees and patient communities; create compliant engagement opportunities.
• Collaborate to deliver patient-facing programs and materials (clinical trial awareness, launch readiness).
• Lead a high-performing team of Patient Advocacy Liaisons; foster accountability and collaboration.
• Ensure timely communication of company info to patient communities; align with cross-functional teams.
• Coordinate with Medical Affairs and other functions to review patient org funding and partnerships.
• Contribute to policy and process design for advocacy activities; drive KPI tracking and impact measurement.
• Organize strategic engagement with patient advocacy organizations at congresses and events.

Skills

Patient advocacy

Biotech advocacy

Regulatory milestones

KOL engagement

Team leadership

Cross-functional collaboration

Strategic planning

Education

Bachelor’s degree

Job description

About Stoke:

Stoke Therapeutics(Nasdaq: STOK), is a biotechnology company dedicated to restoring protein expression by harnessing the body’s potential with RNA medicine. Using Stoke's proprietary TANGO (Targeted Augmentation of Nuclear Gene Output) approach, Stoke is developing antisense oligonucleotides (ASOs) to selectively restore naturally-occurring protein levels. Stoke's first medicine in development, zorevunersen, has demonstrated the potential for disease modification in patients with Dravet syndrome and is currently being evaluated in a Phase 3 study. Stoke's initial focus are diseases of the central nervous system and the eye that are caused by a loss of ~50% of normal protein levels (haploinsufficiency). Proof of concept has been demonstrated in other organs, tissues, and systems, supporting broad potential for Stoke's proprietary approach. Stoke is headquartered in Bedford, Massachusetts. For more information, https://www.stoketherapeutics.com/

Position Purpose:

The Executive Director, Patient Advocacy & Engagement will build upon and execute strategic advocacy engagement initiatives for Stoke's Dravet syndrome, ADOA, and Syngap1 programs, ensuring alignment across key Stoke functions throughout the product lifecycle. There will be a special focus on launch readiness in the U.S. for zorevunersen (Dravet syndrome) and capacity building in ADOA and Syngap1. Reporting to the Vice President of Patient Advocacy and Policy, the candidate must have strong experience in biotechnology or pharmaceutical advocacy with a broad understanding of the business. This person must thrive in a fast-paced environment, be motivated by the patient need and operate with utmost integrity. The Executive Director will work collaboratively with cross functional team members to increase awareness of our programs in the patient community, and bring the patient voice into the everyday decision-making, programming and employee experience.

Key Responsibilities:

• Serve as a liaison between the company and patient community by maintaining strong, trusted relationships, proactively requesting and sharing insights, and responding to community questions and needs in a timely fashion
• Ensure a strong connection between employees and the patient community, including identifying innovative and compliant ways for employees to connect with patients, families and disease communities
• Collaborate internally and play a contributing role on cross-functional teams to create and deliver patient-facing programs and materials (i.e. clinical trial awareness, launch preparedness)
• Build and lead a high performing team of Patient Advocacy Liaisons, while fostering a culture of accountability and collaboration
• Ensure timely and accurate communication of company information and updates to the appropriate patient communities
• Partner effectively with Product & Corporate Communications, Medical Affairs and Clinical Operations to ensure timely, consistent and compliant communication and responses to external patient inquiries about our programs, including clinical trials and access
• Coordinate with Medical Affairs and other internal functions to review and approve patient organization funding and collaboration requests; actively contribute to policy and process design/improvements for these and other related activities
• Lead initiatives to ensure patient insights are brought into Stoke decision-making such as advisory boards and ongoing input into programming and messaging
• In collaboration with Medical Affairs, organize Stoke's strategic engagement with patient advocacy organizations at congresses and events
• Support broader Corporate Affairs efforts, including employee engagement and corporate communications
• Develop and deliver on an annual plan aligned to corporate and department goals, including developing and tracking KPIs and metrics to measure the success of advocacy initiatives; continually innovate and elevate Stoke's approach to patient advocacy and engagement by continuously learning and staying current with best practices
• Manage the patient advocacy budget and lead and oversee external partners, consultants and agency resources.

Required Skills & Experience:

• Bachelor’s degree, preferably in social science, science, public policy, or a health-related field
• 12+ years of professional experience in patient advocacy in a publicly traded biotech/pharmaceutical company or health-related non-profit. The ideal candidate has experience in rare disease, regulatory milestones (i.e., FDA Advisory Committee meetings and approvals), KOL and Society engagement, and commercial-stage experience
• A thorough understanding of the pharmaceutical product lifecycle, including the pre-clinical, clinical, regulatory processes and commercial stages
• Established track record of building and maintaining strong, trusted relationships with colleagues as well as with non-profit and/or patient communities
• Demonstrated ability to create and lead successful patient advocate programs and partnerships in collaboration with internal teams and stakeholders
• Excellent communication skills: written, verbal and presentation delivery; A good listener
• Proven ability to build and lead high performing teams
• Strategic thinker and problem solver; intellectually curious and perceptive; able to identify interdependencies and connections across the business; a critical thinker
• Comfortable in a fast-moving,rapidly changeningvironment; able to establish structure and process when needed; consistently prioritizes high-impact projects; calm under pressure; works with a sense of purpose and urgency
• Understanding of laws and regulations governing the biopharmaceutical industrywith an understanding of regulatory bodies that impact communications and reimbursement, understanding of publicly-traded company communications requirements and rules
• Proven understanding of the needs of individuals living with severe and rare diseases and a demonstrated passion for supporting the patient community
• Holds self and others to a high standard of ethics and integrity. Maintains confidentiality, exercises good judgment and discretion
• Strong leadership skills with demonstrated ability to influence and collaborate across the organization and at all levels, both internally and externally
• Able to work independently with minimal supervision
• Experience working with all levels of management and consulting with key business stakeholders with an ability to influence for greater outcomes
• Ability to travel to key U.S. and global congresses and patient events, as needed (up to 30%)

Benefits & Compensation:

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 $296,000 - $311,000. 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).

Culture & Values:

At Stoke, we believe that innovation, the ability to successfully advance our ground-breaking science and having fun as a team are enhanced by being together in person, at least periodically. We allow for flexibility in work arrangements that balance individual’s needs and preferences with the needs of our business and our desire to foster a culture of collaboration and innovation.

Our values guide our work to deliver meaningful medicines for people who need them. We are committed to being true to ourselves, to our colleagues, and to the people with severe diseases who are counting on us. We embrace diversity within a unique culture that is defined by our values. Our employee-led Diversity, Inclusion, and Belonging (DIB) Committee underscores the importance of DIB to who we are and what we do.

All applicants will receive consideration for employment without regard to race, color, age, religion, sex, sexual orientation, gender identity, national origin, physical or mental disability or protected veteran status.

Stoke participates in E-Verify.