Director, Patient Advocacy & Engagement

About the role

The Director, Patient Advocacy & Engagement advances patient-centric care by shaping regional strategy for Ultragenyx's in-line indications within the Berlin, United Kingdom remote, and Zurich operational footprint. The hire owns the development and execution of patient advocacy strategies that ensure lived experience directly influences business and regulatory decisions for the in-line pipeline. This role builds and sustains authentic, trust-based relationships with patients, caregivers, and advocacy organizations across the designated regions. The Director coordinates cross-functional alignment by partnering with regulatory, communications, and government affairs to integrate patient voices into every major initiative. They leverage company resources efficiently to position advocacy as a recognized leadership function within Ultragenyx's structure. Success in this role requires comfort with complex scientific information and the ability to translate it for diverse audiences and stakeholders. The hire will uncover new partnership opportunities by centering patient and caregiver perspectives in strategic planning for the in-line indications.

Key facts

What you'll do

Patient and caregiver perspectives shape business strategy and uncover new partnership opportunities for Ultragenyx's in-line indications.

The function oversees the patient advocacy budget, manages external strategic partnerships, and positions advocacy as a leader across Ultragenyx while using company resources efficiently.

Perspectives from communities drive deeper engagement and align business strategy with patient and caregiver priorities for Ultragenyx's in-line indications.

Complex scientific information flows between regulatory, commercial, and advocacy stakeholders, aligning access and reimbursement issues compliantly across Ultragenyx research, product development, and commercialization.

You will coordinate cross-functional engagement and partner with regulatory, communications, and government affairs teams to ensure cohesive strategy execution.

The role defines and implements regional advocacy programs that amplify patient voices and support the successful commercialization of in-line indications.

You will establish metrics and governance structures to measure the impact of patient advocacy initiatives on access, reimbursement, and patient outcomes.

The Director will represent Ultragenyx in external forums, ensuring that advocacy efforts reflect the latest science and patient community needs.

You will identify gaps in the patient journey and collaborate with internal teams to design solutions that improve access and adherence for in-line indications.

The position requires clear communication of complex scientific topics to diverse audiences, including patients, clinicians, and regulators.

You will mentor and develop internal teams on patient-centric principles to foster a culture of empathy and collaboration across the organization.

The role involves proactive risk management, anticipating potential advocacy or access challenges, and coordinating timely, compliant responses.

You will serve as a strategic thought partner to commercial and medical teams, translating patient insights into actionable recommendations.

The Director will contribute to the development of policies and partnerships that support equitable access to Ultragenyx therapies across key regions.

Requirements

Candidates hold a Bachelor's degree as a mandatory qualification for the role. A Bachelor's degree is required as a non-negotiable qualification for the role.

Candidates bring 10+ years of experience in biotechnology or pharmaceutical industries to the role. Experience in biotechnology or pharmaceutical industries totaling 10+ years is required for the role.

Candidates have 8+ years in patient advocacy, with rare disease experience preferred. Background in patient advocacy with 8+ years, including preferred rare disease experience, is required.

Travel is expected to occur between 30% of the time as business needs require. Expected travel across business needs spans between 30% of the time.

Candidates must be eligible to work in the regions specified, with the ability to obtain necessary security clearances if required.

All communications regarding the role must maintain strict confidentiality concerning patient data and strategic initiatives.

The hire must demonstrate a proven track record of collaboration with cross-functional internal stakeholders.

Experience navigating regulatory and reimbursement landscapes is essential for success in this position.

Practical notes

Work is officially remote full-time, with occasional travel to offices and hybrid onsite days of 2 3 days per week depending on business needs. Reasonable accommodation is available for applicants with disabilities or protected statuses, and requests can be directed to talentacquisition@ultragenyx.com. Typical interview steps

Leadership hiring usually includes a strategy case, a people scenario, and a values conversation. Candidates may be asked to turn around a struggling team or plan for growth. Past results are examined closely, especially how decisions were made. Interviewers dig into specific decisions you made and their consequences. Preparing two or three decision stories with numbers and lessons is the best use of time.