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.

Reporting to the VP, Patient Advocacy, this role is highly integrated with internal cross-functional teams and partners with external organizations.

This role is based in Waltham, MA and does not offer a remote option. 

Primary Responsibilities include: 

• 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. to support the delivery of high-quality experiences.
• 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%.

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