Head of Global Patient Advocacy & Engagement

Working from Home
Sep 25, 2021
Required Education
Bachelors Degree
Position Type
Full time
BioMarin 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. BioMarin will continue to focus on advancing therapies that are the first or best of their kind.

BioMarin’s Product Portfolio Development (PPD) group is responsible for BioMarin’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 BioMarin.

The importance of patient engagement and patient centricity is increasingly being recognized by the healthcare industry. As BioMarin evolves and enters more competitive and contested spaces there is a recognized need for patient engagement to become more systematic coordinated and strategic in its approach. Global Patient Advocacy and Engagement (GPAE) is a strategic function within BioMarin PPD that leads this effort, by integrating patient perspectives and insights into decision making across the product lifecycle. Specifically, the BioMarin  patient advocacy and engagement group 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 Global Patient Advocacy and Engagement (GPAE) Head is responsible for providing leadership across BioMarin 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 BioMarin accordingly. This role focuses broadly on developing an organization and function which encourages inclusion of patient insights across the company. The GPAE Head leverages his/her leadership and expertise to advise, influence and lead colleagues throughout BioMarin toward advancing patient engagement in a seamless, integrated and strategic fashion.

The GPAE Head is responsible for the leadership and management of GPAE team members. Working alongside senior leadership, the incumbent will ensure coordination of global patient advocacy and engagement strategies and activities across the company.


  1. Provide leadership, direction and expertise in the incorporation of patient insights into decision making
  2. Pursue an enterprise wide approach to patient centricity
  3. patient engagement as a competitive advantage
  4. Develop metrics which support and demonstrate the value of patient engagement to the business
  5. Develop and drive company-wide strategies which support systematic patient community engagement
  6. Embody the PPD Core Values and provide leadership in demonstrating these values through everyday actions and behaviors


 Lead Patient Advocacy and Engagement Strategies Across the Company

  • Integrate patient advocacy and engagement across BioMarin to ensure interactions are seamless, strategic, and coordinated through a GPAE operating model
  • Manage a global team such that regions have access to local and experienced GPAE staff sensitive to local regulations and practices
  • Assess future need for GPAE representation in LATAM and APAC regions
  • Research and maintain current knowledge on global healthcare system regulations, guidelines, and communications constraints to ensure compliance
  • Work with internal partners to develop policies, position statements, SOPs, etc. on patient inclusion and engagement as part of a Centre of Excellence approach
  • Identify patient engagement best practices and incorporate where beneficial into BioMarin Centre of Excellence approach
  • As appropriate, represent GPAE on key senior-level governance forums, working groups and teams in a standing or ad hoc fashion
  • Manage GPAE global OPEX budget
  • Develop Patient Plans (strategic plans) for each BioMarin programme aligned with other functional areas
  • Systemize a corporate process for collating and sharing patient and PAG insights accessible to relevant decision makers

Develop and Drive Company-Wide Approaches on Interactions with Patient Communities

  • Serve as BioMarin’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 Global Patient Advocacy Leadership Council (PALC), a team of senior leaders from across the company that considers and endorses enterprise-wide patient centric  approaches
  • Update and inform senior leaders and other cross-functional partners on key industry trends in relation to patient engagement practice
  • Introduce functional level measures (OKRs) to incorporate patient insights into decision making
  • Identify and deploy external sources of advice to support patient engagement at BioMarin
  • Create opportunities for the BioMarin employees to experience and understand the lives lived by patients and families of the rare diseases


  • BA/BS in health, life sciences, or business, advanced degree preferred; experience in lieu of education accepted
  • 15+ years of relevant pharmaceutical industry experience
  • Successful track record in patient engagement / advocacy required
  • Experience in rare diseases, drug development, commercial patient engagement required
  • Experience of leading change management and cultural change required
  • 5 or more years of people management experience

Absent a Medical or Religious reason that prohibits vaccinations, all our incoming employees must be vaccinated.

We are an equal opportunity employer and all qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity, sexual orientation, national origin, disability status, protected veteran status, or any other characteristic protected by law.