Vice President, Patient Advocacy and Engagement

Vice President, Patient Advocacy And Engagement

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.

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 :

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, and 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.