Executive Director, Global Patient Advocacy & Engagement

Global Patient Advocacy and Engagement (GPAE) HeadCompany 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 objectivesDevelop and drive company-wide strategies on patient community engagementEnsure interactions with patient communities are integrated and seamless across the enterpriseBuild and maintain a unified voice with patient advocacy partners across the product lifecycleKey responsibilities include:Lead patient advocacy and engagement strategies across the companyIntegrate patient advocacy and engagement across our company to ensure interactions are seamless, strategic, and coordinatedServe 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 accordinglyLead 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 approachesUpdate and inform senior leaders and other cross-functional partners on key industry trendsResearch and maintain current knowledge on industry and regulatory trends related to patient advocacy, engagement, and inputIdentify, 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 activitiesWork with internal partners to develop policies, position statements, SOPs, etc. on patient inclusion and engagement as appropriate and necessaryDemonstrate commitment to patient communities through consideration of charitable giving opportunities, community presence and patient-focused programmingAs appropriate, represent GPAE on key senior-level governance forums, working groups and teams in a standing or ad hoc fashionEmbody the PPD Core Values and provide leadership in demonstrating these values through everyday actions and behaviorsDevelop and drive company-wide approaches on interactions with patient communitiesIdentify, 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 recommendationsEnsure approaches maximize "return on engagement" of patient community interactions – focus on optimizing efficiency, competitiveness, agility, risk mitigationAlign with senior leadership and cross-functional partners to ensure coordination of strategies and activities within these Strategic PlansSystemize a corporate process for PAG interactions and generating patient insightsDrive and support implementation of a PAG communication plan at a corporate levelServe on MMRC to review program-specific PAG and patient-focused communications if requestedReview and endorse funding opportunities for patient advocacy groups, as appropriateEnsure tactical elements of Strategic Plans are consistent with GCE policies, ICH/GCP guidelines, and other regional compliance considerationsEnsure that efforts are in alignment with company goals, therapeutic area long range priorities, and patient needs and preferencesPAG Community Relationship Building and Internal Team SupportIn 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 prioritiesIn 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 landscapeIn partnership with the Global Lead, provide perspective and input on strategic plan development for relevant therapeutic areasSupport 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 PAGsEducation 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.