Director, Patient Advocacy and Engagement

Encoded Therapeutics Inc. is a biotechnology company advancing precision medicines for a broad range of genetic disorders. Our mission is to unlock new opportunities for viral gene therapy through genomics-driven discovery. We focus on delivering life-changing advances for individuals with genetic disorders not addressable with current approaches. For more information, please visit www.Encoded.com.

Role Overview

Incorporating the voice of the patient and the family into every stage of development for each of our programs is critical to our mission. Encoded is advancing ETX101 for SCN1A+ Dravet Syndrome through late-stage clinical development toward launch, while initiating clinical development activities for an early-stage program in pain.

As we approach this pivotal era for the company, the Director, Patient Advocacy & Engagement will help build and execute patient advocacy strategies across the portfolio, from launch readiness for late-stage programs to foundational community engagement for programs advancing toward the clinic.

Reporting to the Senior Director, Patient Advocacy & Engagement, this individual will help ensure the patient voice is not just heard, but integrated into the clinical, medical, and commercial strategies that will bring our therapies to families in need. The importance of this role cannot be overstated, and the personal attributes of this individual are of the utmost importance.

Integrity, professionalism, and trustworthiness are key personal traits, as is the ability to engage with patients, families and patient advocacy organizations with sensitivity, compassion and good humor.

Primary Responsibilities

Program Advocacy Strategy & Execution: Help shape and lead execution of patient advocacy strategies across the portfolio, from early community engagement for programs approaching the clinic to launch readiness for late-stage programs.

Pipeline Support: Support advocacy engagement for emerging pipeline programs, identifying key stakeholders and establishing long-term partnerships in new therapeutic areas.

External Partnership Management: Build and maintain productive, high-trust relationships with patient advocacy organizations, community leaders, clinicians, and industry partners.

Patient Insights: Plan and execute listening sessions, advisory boards, and other insight-generation activities, translating findings into recommendations that inform development and launch planning.

Cross-Functional Integration: Partner with Clinical Operations, Medical Affairs, Regulatory, Health Economics and Outcomes Research, Market Access, Commercial, and Corporate Communications to ensure the patient voice informs research, policy, and educational programs.

Patient & Caregiver Outreach: Facilitate the development of evidence-based educational materials and programs for families, supporting a clear understanding of gene therapy and clinical milestones.

Clinical Trial Awareness: Support ethical, compliant clinical trial awareness and community engagement in partnership with Clinical Operations, Medical Affairs, and advocacy organizations.

Patient Engagement: Connect directly with patients and families as required to handle inquiries while strictly maintaining privacy and confidentiality standards.

Operational Oversight: Manage projects, budgets, grants, sponsorships, and external vendors, ensuring alignment with company objectives, compliance requirements, and community needs.

Internal Culture: Serve as an internal resource to champion the patient perspective and contribute to initiatives that embed a patient-centric mindset across the company.

Compliance & Regulatory Alignment: Maintain a strong working knowledge of ICH, GCP, HIPAA, and Medical–Legal–Regulatory review processes to ensure all advocacy activities meet the highest ethical standards.

Requirements

• Bachelor’s Degree in a healthcare-related field, such as Nursing or Science with a minimum of 12 years in patient advocacy or a closely related biopharmaceutical discipline with a bachelor’s degree, or 8 years with a master’s degree, with a proven track record in rare disease clinical development and community engagement.
• Leadership Qualities: A motivated professional who demonstrates good judgment, professionalism, and the ability to influence partners and develop consensus without direct authority.
• Strategic Execution: Demonstrated success executing advocacy plans and translating patient insights into practical deliverables. An ability to think strategically and critically, and one that executes tactically to deliver positive results for the business and the patients we serve. Must be self-motivated, able to prioritize, take initiative, and manage a high volume of work with minimal supervision.
• Communication: Outstanding oral and written communication skills, including the ability to translate complex scientific and clinical information into clear, empathetic language and to present effectively to both large audiences and small stakeholder groups.
• Collaboration: A proven track record of establishing relationships across management teams and external stakeholder groups, including clinicians and researchers.
• Organizational Skills: Strong problem-solving abilities and attention to detail, with the ability to manage multiple projects, vendors, and competing priorities concurrently. Proficiency with MS Office Suite and archiving systems.
• Travel: Willingness to travel domestically and internationally as needed to engage with the patient community and advocacy partners.
• Preferred Skills & Experience
• Master’s degree and clinical experience as a healthcare professional (e.g., genetic counselor or nurse).
• Direct experience with rare genetic disorders, neurology (including epilepsy or pain), and gene therapy programs.
• Experience supporting programs across stages of development, from preclinical or early-stage community engagement through commercialization.
• Experience with patient-focused drug development, patient-experience research, and the development of patient-centered evidence.
• Proven ability to manage external consultants, agencies, research vendors, grants, sponsorships, and project budgets.

For candidates based in the San Francisco Bay Area the salary range for this position is 220,000 - 250,000

For candidates based outside the San Francisco Bay Area, the salary range is 220,000 - 240,000

Encoded considers a variety of factors when determining base compensation, including experience, qualifications, internal equity and geographic location. Actual compensation will be determined based on relevant skills, experience, qualifications, internal equity, and business needs. This position may also be eligible for a discretionary annual bonus, discretionary stock-based long-term incentives, paid time off, and a benefits package.