Director, Patient Advocacy and Operations

Role Summary

The Director, Patient Advocacy & Operations works as part of the Corporate & Patient Affairs (C&PA) team with two key areas of focus: 1) Cultivating and supporting strategic partnerships with patient advocacy organizations and 2) day-to-day management of key Patient Advocacy and Corporate Affairs operations.

Primary Responsibilities

• In collaboration with the VP of Patient Advocacy, partner closely with advocacy leaders and the broader patient community to advance key initiatives, including but not limited to:
• Executing the patient advocacy strategy in alignment with corporate objectives
• Fostering strong, strategic relationships with patient leaders, caregivers, and advocacy organizations to inform company programs and priorities
• Leading the planning and management of Patient Community Advisory Panels/Boards
• Conducting one-on-one engagements with patient advocacy leaders to identify needs, insights, and opportunities for collaboration
• Supporting clinical trial awareness and recruitment efforts through patient engagement and community-focused initiatives
• Collaborating with Medical Affairs, Marketing, Market Access/Patient Services, and Corporate Affairs to integrate the patient voice into R&D, clinical trial design, and commercialization efforts
• Representing Dyne at patient advocacy events, conferences, and advisory boards
• Collecting, synthesizing, and sharing patient community insights across functional teams
• Identifying and coordinating community participants for Dyne-led events (internal and external)
• Partner with the VP of Patient Advocacy to plan and execute conference and patient advocacy organization (PAO) engagement activities:
• Supporting Dyne’s presence at patient advocacy and select scientific/medical conferences including event planning, session development, patient-facing materials, symposia, presentations, and on-site event execution
• Staffing events; willingness to travel approximately 20%
• Serve as the operational lead for the Patient Advocacy Grants, Sponsorships & Donations committee, including budget oversight and end-to-end management of the submission process, such as coordinating with requestors, ensuring proper documentation, and overseeing contracting and payment workflows.
• Support the planning and execution of enterprise-wide events (e.g., advocacy walks) that bring patient community voices into the organization, serving as a Patient Advocacy representative on cross-functional teams and supporting coordination tasks when needed.
• Manage and own patient engagement–related contracting, ensuring compliance and timely execution.
• Lead operational processes for advancing patient advocacy materials through Medical Legal Review (MLR), ensuring accuracy, alignment, and compliance.

Education and Skills Requirements

• Bachelor’s degree in a relevant field and a minimum of 10+ years of related experience (social work, genetic counseling, nursing, public health preferred).
• 8+ years of experience in patient advocacy in the biotech/pharmaceutical industry, preferably within a clinical stage biotechnology company.
• Proven experience developing and sustaining partnerships with patient advocacy organizations and community leaders.
• Deep understanding of rare diseases and the unique needs of rare disease communities.
• Strong understanding of the Patient-Focused Drug Development (PFDD).
• Exceptional communication, diplomacy, and cross-functional collaboration skills.
• Experience managing budgets, teams, and compliance-sensitive partnerships within a regulated environment.
• Proven experience partnering with clinical teams on trial awareness and recruitment efforts.
• Broad knowledge of the biopharma landscape and a solid working understanding of the drug development process.
• Strong interpersonal skills with the ability to influence without authority and work effectively across diverse functions and personalities.
• Compassionate, patient-centered mindset, and a high degree of personal integrity.
• Ability to manage multiple simultaneous projects, navigate ambiguity, and thrive in a fast-paced, dynamic environment.
• Experience with Patient Advocacy sponsorship contracting processes.
• Proven operations experience and excellent project, vendor, and budget management capabilities with a demonstrated ability to deliver results.
• Strong organizational skills and attention to detail.
• Bilingual fluency in Spanish is a plus.
• Overnight travel will be required; up to 20%.