Director, Patient Advocacy and Engagement

This is a fully remote position, open to applicants in California.

📋 Description

• Contribute to the development and implementation of patient advocacy strategies across the entire portfolio.

• Facilitate advocacy engagement for upcoming pipeline programs by identifying influential stakeholders and forming enduring partnerships.

• Establish and nurture relationships with patient advocacy organizations, community leaders, healthcare professionals, and industry collaborators.

• Organize and conduct listening sessions, advisory boards, and various activities aimed at generating insights.

• Convert patient insights into actionable recommendations that guide development and launch planning.

• Collaborate with Clinical Operations, Medical Affairs, Regulatory, Health Economics and Outcomes Research, Market Access, Commercial, and Corporate Communications teams.

• Create evidence-based educational resources and programs tailored for patients and their families.

• Promote ethical and compliant awareness of clinical trials and community engagement.

• Interact directly with patients and families to address inquiries while ensuring their privacy and confidentiality.

• Oversee projects, budgets, grants, sponsorships, and relationships with external vendors.

• Advocate for the patient perspective and play a key role in fostering a patient-centric culture.

• Keep updated on ICH, GCP, HIPAA, and Medical–Legal–Regulatory review processes.

⛳️ Requirements

• Bachelor’s Degree in a healthcare-related discipline, such as Nursing or Science, with at least 12 years of experience in patient advocacy or a similar biopharmaceutical field with a bachelor’s degree, or 8 years with a master’s degree.

• Demonstrated success in rare disease clinical development and community engagement.

• Strong judgment, professionalism, and ability to persuade partners and build consensus without direct authority.

• Proven ability to execute advocacy plans and translate patient insights into actionable outcomes.

• Strategic and analytical thinker with strong tactical execution skills.

• Self-driven, capable of prioritizing tasks, taking initiative, and managing a high workload with minimal oversight.

• Exceptional oral and written communication skills.

• Proficient in translating complex scientific and clinical information into clear and compassionate language.

• Capable of presenting effectively to both large audiences and small stakeholder groups.

• Proven experience building relationships across management teams and with external stakeholders, including clinicians and researchers.

• Strong problem-solving skills and meticulous attention to detail.

• Ability to concurrently manage multiple projects, vendors, and competing priorities.

• Proficient in MS Office Suite and archiving systems.

• Willingness to travel domestically and internationally as necessary.

• A master’s degree and clinical experience as a healthcare professional is preferred.

• Direct experience with rare genetic disorders, neurology (including epilepsy or pain), and gene therapy programs is preferred.

• Experience supporting programs from preclinical or early-stage community engagement through to commercialization is preferred.

• Familiarity with patient-focused drug development, patient-experience research, and patient-centered evidence is preferred.

• Proven capability to manage external consultants, agencies, research vendors, grants, sponsorships, and project budgets is preferred.

🏝️ Benefits

• Comprehensive benefits package, featuring competitive employer premium contributions.

• Significant stock option grants.

• Paid time off, sick leave, and holiday pay.

• Generous Parental Leave program.

• Pre-tax medical and dependent care programs.

• Short-term disability, long-term disability, life insurance, and accidental death & dismemberment coverage.

• Opportunities for professional development.

• Team-building events.

• Fully stocked micro-kitchen.

• Fitness center available at the South San Francisco location.

• Discretionary annual bonus.

• Discretionary stock-based long-term incentives.