Executive Director, Global Patient Advocacy & Engagement

Global Patient Advocacy and Engagement (GPAE) Head

Company is the world leader in delivering therapeutics that provide meaningful advances to patients who live with serious and life-threatening rare genetic diseases. We target diseases that lack effective therapies and affect relatively small numbers of patients, many of whom are children. These conditions are often inherited, difficult to diagnose, progressively debilitating and have few, if any, treatment options. Our company will continue to focus on advancing therapies that are the first or best of their kind.

Our company's Product Portfolio Development (PPD) group is responsible for our company's corporate and R&D governance, business operating model (core teams and sub-teams) and portfolio strategy. PPD integrates overall product strategy and ensures planning and timely execution to inform decision making and development of therapies and life cycle strategies at our company. Global Patient Advocacy and Engagement (GPAE) is a strategic function within our company's PPD that works with patients, caregivers, and disease-specific non-profit patient advocacy groups throughout the life cycle to advance important therapies for unmet medical needs. The GPAE group at company integrates internal patient advocacy efforts, develops global, prospective patient advocacy plans for each disease area, partners with external advocacy groups to advance mutual goals in the patient ecosystem such as education, access and awareness, and supports project and study patient recruitment and retention activities.

The Global Patient Advocacy and Engagement (GPAE) Head is responsible for providing leadership across our company in support of GPAE's vision, mission and strategic direction. The role reports to the Group Vice President, Product Portfolio Development (PPD). The incumbent is a global subject matter expert on industry-wide patient-centric approaches, common practices and trends and drives incorporation of the patient voice across our company accordingly. This role focuses broadly on incorporating best practices for inclusion of the patient voice both across the company and across all therapeutic areas. The GPAE Head leverages his/her leadership and expertise to advise, influence and lead colleagues throughout our company toward advancing patient advocacy and engagement in a seamless, integrated and strategic fashion. The GPAE Head is responsible for the leadership and management of employees and contractors, including global and regional program leads. The incumbent will ensure coordination of global patient advocacy and engagement strategies and activities across the company, working alongside senior leadership to ensure systematic inclusion of patient perspective both at a corporate and therapeutic-area level.

Principal responsibilities are:

• Provide leadership, direction and expertise across business units for incorporation of the patient perspectives to support corporate objectives
• Develop and drive company-wide strategies on patient community engagement
• 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

Key responsibilities include:

• Lead patient advocacy and engagement strategies across the company
• Integrate patient advocacy and engagement across our company to ensure interactions are seamless, strategic, and coordinated
• Serve as our company's primary voice and subject matter expert on patient-centric practices and trends, and provide perspectives and expertise to senior leadership and cross-functional partners accordingly
• Lead and implement recommendations from the Global Patient Advocacy Leadership Council (PALC), a team of senior leaders from across the company that considers and endorses enterprise-wide patient engagement approaches
• Update and inform senior leaders and other cross-functional partners on key industry trends
• Research and maintain current knowledge on industry and regulatory trends related to patient advocacy, engagement, and input
• Identify, develop, and implement best practices for working/communicating with cross-functional leadership from partners such as Commercial, Global Medical Affairs, Regulatory Affairs, Research and Early Development, Market Access, Corporate Communications, Investor Relations and GPAE's cross-functional Global Advocacy & Partnerships Teams (APTs) and Regional Patient Engagement Teams (PETs) on ongoing, shared regional PAG-related activities
• Work with internal partners to develop policies, position statements, SOPs, etc. on patient inclusion and engagement as appropriate and necessary
• Demonstrate commitment to patient communities through consideration of charitable giving opportunities, community presence and patient-focused programming
• As appropriate, represent GPAE on key senior-level governance forums, working groups and teams in a standing or ad hoc fashion
• Embody the PPD Core Values and provide leadership in demonstrating these values through everyday actions and behaviors
• Develop and drive company-wide approaches on interactions with patient communities
• Identify, develop and implement best practices for incorporating the patient voice across our company and ensure Integrated (cross-functional) Patient Advocacy Strategic Plans align with these recommendations
• Ensure approaches maximize "return on engagement" of patient community interactions focus on optimizing efficiency, competitiveness, agility, risk mitigation
• Align with senior leadership and cross-functional partners to ensure coordination of strategies and activities within these Strategic Plans
• Systemize a corporate process for PAG interactions and generating patient insights
• Drive and support implementation of a PAG communication plan at a corporate level
• Serve on MMRC to review program-specific PAG and patient-focused communications if requested
• Review and endorse funding opportunities for patient advocacy groups, as appropriate
• Ensure tactical elements of Strategic Plans are consistent with GCE policies, ICH/GCP guidelines, and other regional compliance considerations
• Ensure that efforts are in alignment with company goals, therapeutic area long range priorities, and patient needs and preferences
• PAG Community Relationship Building and Internal Team Support
• In partnership with the GPAE Global Lead and Regional Leads (RLs) for supported therapeutic areas, and in alignment with therapeutic area Strategic Patient Advocacy Plans, build and maintain relationships with PAGs across therapeutic areas, working to maintain an understanding of their needs and priorities
• In partnership with the Global Lead and RLs for supported therapeutic areas, identify and profile key PAGs to assess capabilities, initiatives, and areas of mutual interest; maintain awareness of global PAG leadership and political landscape
• In partnership with the Global Lead, provide perspective and input on strategic plan development for relevant therapeutic areas
• Support cross-functional partners as appropriate and agreed with relevant therapeutic area Global Lead by staying up-to-date on progress, sharing PAG needs and perspectives, and promoting opportunities for collaboration with PAGs

Education and experience: BA/BS in health, life sciences, or business, advanced degree preferred; experience in lieu of education accepted. 12+ years of relevant pharmaceutical industry experience. Experience in patient engagement / advocacy, rare disease therapies, and/or drug development preferred. 2 or more years of people management experience.