VP, Global Patient Advocacy

Company Overview:

Dyne Therapeutics is focused on delivering functional improvement for people living with genetically driven neuromuscular diseases. We are developing therapeutics that target muscle and the central nervous system (CNS) to address the root cause of disease. The company is advancing clinical programs for myotonic dystrophy type 1 (DM1) and Duchenne muscular dystrophy (DMD), and preclinical programs for facioscapulohumeral muscular dystrophy (FSHD) and Pompe disease. At Dyne, we are on a mission to deliver functional improvement for individuals, families and communities. Learn more https://www.dyne-tx.com/, and follow us on X, LinkedIn and Facebook.  

Role Summary:

The Vice President, Global Patient Advocacy is an experienced and hands-on leader who defines the strategy for and manages all patient engagement, communications and programs. This individual is a member of the Corporate and Patient Affairs (C&PA) team where they contribute to overarching Dyne objectives and plans by developing and implementing global and regional advocacy strategies and initiatives.

This role collaborates cross-functionally to cultivate and advance strategic partnerships with key stakeholders, including regional, national and global patient advocacy organizations (PAOs), policy stakeholders, healthcare professionals and medical organizations to drive shared objectives with patient communities and to support Dyne corporate and program goals. The VP, Global Patient Advocacy is the primary Dyne contact and relationship manager for PAOs and patients/families, and leads on coordination when other functions interface with these stakeholders.

In addition to the C&PA team, this role is expected to contribute to enterprise-wide thinking and projects with key cross-functional partners including Medical Affairs, Clinical Development, Clinical Operations, Regulatory Affairs, Legal, Compliance, Commercial, and Research.

This role is based in Waltham, MA without the possibility of being a remote role.

Primary Responsibilities Include:

• Define the strategic plan for and holistic company philosophy on patient advocacy
  • Strategic plan should identify and drive corporate and program goals which are aligned with the shared goals of PAOs, individuals living with neuromuscular diseases and their families and caregivers
  • Tactics within the plan may include but are not limited to webinars, educational programs, disease awareness initiatives, advisory boards, patient speaker engagement, clinical trial awareness, and policy advocacy, as well budget and metrics
• Ensure systematic inclusion of patient and caregiver perspectives at corporate and program levels, including into policy and access initiatives and clinical trial designs
• Lead cross-functional teams that develop programs, communications and collateral to educate patient/family and PAO audiences on Dyne programs
• Support PAOs with regulatory bodies and payors to reinforce innovation and access
• Identify, establish and ensure that the infrastructure, resources and processes are in place to execute the overall patient advocacy and engagement strategy
  • Databases and related tracking tools for all Dyne PAO engagements
  • Management, tracking and assessment of all engagements, key actions and insights obtained from interactions between Dyne and PAOs and individuals
• Lead Dyne’s cross-functional grants and sponsorships committee, plan and process with support from the C&PA operations manager
  • Manage intake, review and approval of PAO-related conference sponsorship and program support grant requests
• Own compliant individual patient engagement
  • Develop and secure approval for patient facing responses to inquiries received from patient communities regarding Dyne’s clinical trials, drug development programs and other related topics
  • Track all patient channels (email boxes, Facebook and other social media chat functions, etc.) and provide prompt and thoughtful responses
  • Develop and maintain policies and procedures for patient engagement
• Drive presence at PAO events and meetings and share takeaways
• Lead the organization and execution of internal employee events involving and/or supporting patients and PAOs (i.e., patient speakers, Rare Disease Day, etc.)
• Contribute to insight generation and implications with cross-functional partners
• Serve as Dyne’s subject matter expert on patient-centric industry and advocacy practices and trends, and provide perspectives and educati