Director, Patient Advocacy & Engagement

Position Purpose:

The 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 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)
• 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
• 10 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
• 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 changing environment; 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 industry with 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%)

Location(s):

Stoke is located in Bedford, MA.  This position is a hybrid position (2-3 days/week) with an office setting based in Bedford, MA location.

Travel:

This position will require approximately 30% 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 $231,000 - $242,000 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).