Director, Patient Advocacy (Enzyme Therapies, U.S.)

Roles and Responsibilities

• Define, lead and implement BioMarin’s patient advocacy activities in assigned therapeutic areas and geographies ensuring that patient insights are understood by pipeline/therapeutic area and regional leaders and considered in making key business decisions
• Position BioMarin as the global leader in patient advocacy in assigned therapeutic areas/geography, representing the company and building trust with key advocacy groups
• Lead the development of initiatives, to connect patient communities to the respective Business Unit / International teams and ensure that our work is advancing key priorities
• Develop and nurture open and transparent professional relationships with key PAGs and determine opportunities for developing strong partnerships, including co-created/collaborative programs in alignment with business priorities
• Implement community outreach to advocacy groups in assigned therapeutic areas/geography from preclinical development through commercialization to help inform activities such as clinical trial design and to understand patient need; ensure feedback is promptly delivered to community
• Cook up interactions with Patient Advocacy groups in assigned therapeutic areas/geographies across BioMarin’s internal functions (including Commercial, R&D and Medical Affairs), to ensure that we are presenting a single and unified vision to the community
• Ensure Patient Advocacy engagement and activations align to the business priorities in assigned therapeutic area/geography
• Support Patient Advocacy Therapeutic Area/Geography Lead and represent Patient Advocacy for assigned areas of responsibility in key cross-functional governance forums
• Act as a point of contact in assigned therapeutic area/geography for incoming enquiries from patient groups including Grants and Sponsorships, providing compliant guidance and support as required
• Develop strategic patient advocacy plan for the assigned therapeutic area/geography aligned with other functional areas; ensuring that the right level of resources is invested at the right time
• For assigned areas of responsibility: manage budget, accurately forecasting spend and adjusting as needed to align with business priorities
• Support Patient Advocacy Therapeutic Area/Geography Lead in creating opportunities for BioMarin employees to experience and understand the lived experiences of patients and families impacted by genetically defined conditions in the assigned therapeutic area
• Travel – approx. 30%

Qualifications

• 10+ years of patient advocacy experience in the healthcare/biopharma setting. Rare disease experience is preferred.
• A proven track record in patient engagement / advocacy with demonstrated impact on business outcomes from preclinical research to clinical trials and commercial outputs
• Sound judgment and the ability to work seamlessly with colleagues in assigned therapeutic area and externally
• Ability to influence cross-functional teams and build consensus across the assigned therapeutic area/geography
• Demonstrated knowledge of regulations governing patient advocacy and deep understanding of the regulatory/healthcare environment in assigned therapeutic area/geography
• Collaborative working style and working as part of a growing team
• BS/BA in science, business or liberal arts; advanced degree preferred