Executive Director, Patient Advocacy & Engagement

About this role

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, visit 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)

• 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, regu