Director, Patient Advocacy and Engagement

Department:

Locations:

United States

Type:

Full time

Req#:

LRP-

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

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 ETX
101 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.

• 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, sponsor ships, 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…