Director, Patient Advocacy and Engagement
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Job Description
Patient advocacy director shaping rare-disease and gene-therapy engagement strategies at Encoded Therapeutics. Integrating patient insights into clinical development, launch planning, education, and commercial strategy.
Responsibilities:
- Help shape and lead execution of patient advocacy strategies across the portfolio
- Support advocacy engagement for emerging pipeline programs by identifying key stakeholders and establishing long-term partnerships
- Build and maintain relationships with patient advocacy organizations, community leaders, clinicians, and industry partners
- Plan and execute listening sessions, advisory boards, and other insight-generation activities
- Translate patient insights into recommendations informing development and launch planning
- Partner with Clinical Operations, Medical Affairs, Regulatory, Health Economics and Outcomes Research, Market Access, Commercial, and Corporate Communications
- Develop evidence-based educational materials and programs for patients and families
- Support ethical and compliant clinical trial awareness and community engagement
- Connect directly with patients and families to handle inquiries while maintaining privacy and confidentiality
- Manage projects, budgets, grants, sponsorships, and external vendors
- Champion the patient perspective and contribute to a patient-centric culture
- Maintain working knowledge of ICH, GCP, HIPAA, and Medical–Legal–Regulatory review processes
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
- Proven track record in rare disease clinical development and community engagement
- Good judgment, professionalism, and ability to influence partners and develop consensus without direct authority
- Demonstrated success executing advocacy plans and translating patient insights into practical deliverables
- Strategic and critical thinking with tactical execution skills
- Self-motivated, able to prioritize, take initiative, and manage a high volume of work with minimal supervision
- Outstanding oral and written communication skills
- Ability to translate complex scientific and clinical information into clear, empathetic language
- Ability to present effectively to large audiences and small stakeholder groups
- Proven track record establishing relationships across management teams and external stakeholder groups, including clinicians and researchers
- Strong problem-solving abilities and attention to detail
- Ability to manage multiple projects, vendors, and competing priorities concurrently
- Proficiency with MS Office Suite and archiving systems
- Willingness to travel domestically and internationally as needed
- Master’s degree and clinical experience as a healthcare professional preferred
- Direct experience with rare genetic disorders, neurology, including epilepsy or pain, and gene therapy programs preferred
- Experience supporting programs from preclinical or early-stage community engagement through commercialization preferred
- Experience with patient-focused drug development, patient-experience research, and patient-centered evidence preferred
- Proven ability to manage external consultants, agencies, research vendors, grants, sponsorships, and project budgets preferred
Benefits:
- Comprehensive benefits package, including competitive employer premium contributions
- Meaningful stock option grants
- PTO, sick time and holiday pay
- Generous Parental Leave program
- Pre-tax medical and dependent care programs
- STD, LTD, Life and AD&D
- Professional development opportunities
- Team-building events
- Fully stocked micro - kitchen
- Fitness center at South San Francisco location
- Discretionary annual bonus
- Discretionary stock-based long-term incentives
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