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

About the role

The Director, Patient Advocacy, is responsible for the development and execution of the patient advocacy strategy in assigned therapeutic area/geography, ensuring that voice of patients is shaping and generating impact from preclinical research to clinical trials and commercial outputs.

This role reports to the Senior Director, Patient Advocacy Lead, Enzyme Therapies. This individual will develop, lead and drive high-impact, strategic patient advocacy initiatives that enhance business outcomes and strengthen corporate reputation in assigned therapeutic areas and geographies.

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/geographies 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
• 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

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
• 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