Vice President, Global Patient Advocacy

Role Summary:

The Vice President, Global Patient Advocacy is a strategic leader who defines the strategy for and manages all engagement, communications and programs related to our global patient advocacy identification and engagement efforts. This individual is a member of the Global Medical Affairs (GMA) Leadership Team where they contribute to overarching GMA objectives and plans.  This role is responsible for identifying, developing, and implementing global and regional neuromuscular and disease-specific advocacy initiatives  to aligned with Dyne’s drug development objectives.

This role collaborates cross-functionally to cultivate and advance strategic partnerships with key stakeholders across Dyne’s programs, including regional, national, and global patient advocacy organizations (PAOs), policy stakeholders, and medical organizations to advance the unmet needs of patients, empower the patient voice, support disease awareness, drive advocacy, and support disease education to support project, program, and trial related educational and awareness activities. Key cross-functional partners include other GMA functions, Clinical Development/Operations, Regulatory Affairs, Corporate Communications/IR, Legal, Market Access and Commercial, Research and others.

Primary Responsibilities Include:

• Define the overarching strategic plan and holistic company philosophy on patient advocacy engagements
• Ensure systematic inclusion of patient perspectives both at a corporate and therapeutic-area level
• Develop programs, communications, and collateral to educate key patient/family and Patient Advocacy Organization (PAO) audiences to raise awareness of, and educate on Dyne programs
• Accountable for ensuring that Dyne engagement with PAOs and related communities remains positive, consistent and linked to annual and long term objectives
  • Act as primary Dyne contact for all external patient communities, PAO leaders, and patients/families to ensure coordination in interactions
  • Operate as Dyne’s primary voice on patient-centric practices and trends, and provide perspectives and expertise to senior leadership and cross-functional partners accordingly
• Identify, establish and ensure that the infrastructure, resources and processes are in place to execute the overall patient advocacy and engagement strategy
  • Ensure interactions with patient communities are integrated and seamless across the enterprise
  • Build and maintain a unified voice with patient advocacy partners across the product lifecycle
  • Develop and maintain databases and related tracking tools for all Dyne PAO engagements
  • Foster relationships and access with key stakeholders and their communities
  • Ensure management, tracking and assessment of all engagements, key actions and critical insights obtained from interactions between Dyne and PAO partners and related communities across the company
• Serve as the global subject matter expert on industry-wide patient-centric approaches and common practices
• Represent Dyne patient advocacy on key senior-level governance forums, working groups and teams
• Leverage leadership and expertise to advise, influence, and lead colleagues throughout Dyne toward advancing patient advocacy and engagement in a seamless, integrated and strategic manner
• Stay abreast of new PAO activities in Dyne disease areas, and brings important activities and individuals to attention of appropriate internal partners
• 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 respond defined period
• Lead meaningful relationship engagement with patient advocacy and professional organizations
• Work with internal partners to develop and maintain policies, position statements, SOPs, on patient inclusion and engagement as appropriate and necessary
• Manage intake, review and approval of PAO-related conference sponsorship and program support grant requests; ensures compliance with respect to all requests and processing
• Define and deliver on metrics to measure advocacy efforts
• Create and maintain therapeutic area tailored advocacy strategies and operational engagement that may include but are not limited to educational programs, disease awareness initiatives, advisory boards, patient speaker engagement, clinical trial awareness, and policy improvements
• Support the development and deployment of advocacy campaigns
• Lead relationship development with key advocacy and professional societies to ensure productive ongoing partnerships based on shared patient- focused objectives and ensure relationships are strategic not just transactional
• Drive presence at relevant advocacy organization events and meetings and share key takeaways with relevant internal partners
• Introduce and embed a patient-centric approach and engagement in organizational activities
• Define and manage budget for patient advocacy activities
• Understand and abides by global compliance regulations 
• Travel globally to various patient advocacy related conferences 

 Education and Skills Requirements:

• Minimum of a bachelor’s degree in life science or related discipline preferred
• Minimum of 10 years of experience in patient advocacy, preferably in a clinical-stage biotechnology company
• Expert understanding of the patient community, preferably with experience in neuromuscular disorders, to bring the patient perspective into Dyne decision-making
• Working knowledge of patient advocacy codes of conduct and regulations across major geographies
• Experience with vendor selection and management
• Experience with effective and efficient project and budget management
• Experience working on global cross-functional teams across development phases from discovery through launch
• Ability to work independently with strong organizational, prioritization and analytical skills
• Ability to manage multiple projects simultaneously
• History of working in complex cross-functional team environments with numerous/diverse stakeholders, including alliance partners, across the globe
• Ability to apply good judgment and lead problem solving within the team
• Strong verbal, written and interpersonal communication skills
• Ability to influence without authority at all levels of the organization
• Ability to travel in the U.S. and outside of the U.S. on a regular basis, approximately 35-40% of time

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