Vice President, Patient Advocacy and Engagement

Why Join Us?   Be a hero for our rare disease patients   At Ultragenyx, we fundamentally believe that taking real impactful action to care for the needs of patients and our people is always the right thing to do. To achieve this goal, our vision is to lead the future of rare disease medicine. For us, this means going where other biopharma companies won’t go – challenging the status quo and creating a new model that advances our field so more patients and caregivers can benefit from life-changing treatments. We do this by following the science, applying a novel rapid development approach, making innovative medicines at fair and reasonable prices, and creating a collaborative ecosystem to reach patients in ways that are most meaningful for them.    Our commitment and care for patients extends to our people, so culture is an essential cornerstone for Ultragenyx. We remain continuously focused on creating a supportive and inclusive environment of profound learning and growth – so employees can thrive in all areas of their lives, in and outside of work. Ultimately, we want to be an organization where we would be proud for our family, friends and children to work.   If you want to have a meaningful impact, do the best work of your career, and grow a lot, both professionally and personally, come join our team.

Position Summary:

Ultragenyx is committed to transforming the lives of patients with rare and ultra-rare, genetically defined diseases. Patient engagement and advocacy are essential to the success of our discovery, development, and commercialization efforts. The Vice President of Patient Advocacy & Engagement will serve as a senior leader and trusted partner to both patient communities and the Ultragenyx executive team, embedding the patient perspective across all aspects of the business. 

This individual will be responsible for defining and executing a global patient advocacy strategy that evolves with Ultragenyx’s growth from a clinical stage to a fully integrated commercial biotech. The role requires building trusted, long-term partnerships with patient communities, advancing Ultragenyx’s patient-centric culture, and ensuring that patient voices directly shape trial design, access strategies, and commercial readiness. 

ultradedicated – Your biggest challenges yield rare possibilities

Work Model:

Flex: This role will typically require onsite work 2-3 days each week, or more depending on business needs. In many locations, the business will set certain days each week that Flex employees are required to be onsite.

Responsibilities:

• Serve as the primary global interface with rare and ultra-rare disease communities, advocacy groups, and stakeholders
• Lead, expand, and develop the patient advocacy team in alignment with Ultragenyx’s mission and commercial growth
• Define and execute a comprehensive patient engagement strategy that spans discovery through commercialization
• Advise the CEO, CLO, and executive team on patient advocacy priorities to shape corporate decisions and external partnerships
• Champion the patient voice internally, embedding insights into clinical development, trial design, access, and commercialization strategies
• Build Ultragenyx’s reputation as a trusted, credible, and innovative partner for rare disease advocacy organizations worldwide
• Monitor and share emerging trends, policies, and community insights to ensure Ultragenyx remains a leader in rare and ultra-rare advocacy
• Ensure all patient interactions adhere to the highest standards of compliance and ethical engagement

Requirements:

• 15+ years of experience in patient advocacy leadership, including deep expertise in rare and/or ultra-rare disease communities
• Significant experience in biotechnology or pharmaceuticals, with a proven ability to influence both clinical development and commercial strategies
• Strong understanding of the end-to-end drug development and commercialization process
• Exceptional leadership, communication, and team-building skills
• Demonstrated success in cross-functional collaboration at the executive level
• Bachelor’s degree required; advanced degree strongly preferred
• Willingness to travel (~30%, including global)

#Li-Cs1 #Li-Hybrid

The typical annual salary range for this full-time position is listed below. This range reflects the characteristics of the job, such as required skills and qualifications and is based on the office location noted in this job posting. The range may also be adjusted based on applicant's geographic location.

This position is eligible for annual bonus and equity incentives. Actual individual pay is determined by demonstrated experience and internal equity alignment.

Pay Range$317,900—$392,700 USD  Full Time employees across the globe enjoy a range of benefits, including, but not limited to:   ·         Generous vacation time and public holidays observed by the company ·         Volunteer days ·         Long term incentive and Employee stock purchase plans or equivalent offerings ·         Employee wellbeing benefits ·         Fitness reimbursement ·         Tuition sponsoring ·         Professional development plans   * Benefits vary by region and country

Ultragenyx Pharmaceutical is an equal opportunity employer and prohibits unlawful discrimination based on race, color, religion, gender, sexual orientation, gender identity/expression, national origin/ancestry, age, disability, marital and veteran status, and any other status or classification protected by applicable federal, state, and/or local laws. Reasonable accommodation will be provided for all protected statuses or classifications protected by applicable law, including individuals with disabilities, disabled veterans, for pregnancy, childbirth, and related medical conditions, and based on sincerely held religious beliefs. Applicants can request an accommodation prior to accepting a job offer. If you require reasonable accommodation in completing this application, or in any part of the recruitment process, you may contact Talent Acquisition by emailing us at talentacquisition@ultragenyx.com.

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Note to External Recruiters: All candidate activity and open positions are managed strictly through our Human Resources Department. Our Human Resources Department kindly requests that recruiters not contact employees/hiring managers directly in an attempt to solicit business and present candidates. Please note that failure to comply with this request will be a factor in determining a professional relationship with our organization. Submission of unsolicited resumes prior to an agreement set in place between the Human Resources Department and the recruiting agency will not create any implied obligation.  Inquiries on developing a recruiting relationship with us, may be directed to: talentacquisition@ultragenyx.com.