Vice President, Patient Advocacy And Engagement

ultraimpact - Make a difference for those who need it most

Engagement with patients and Patient Advocacy groups is a critical success factor for the discovery, development and approval of investigational therapeutic programs in rare and genetically defined diseases. Direct patient interaction is required throughout discovery and development to inform trial design and recruitment, and to develop the appropriate partnerships necessary to support the commercialization phase and effectively serve the patient community.

The VP of Patient Advocacy and Engagement will partner closely with these patient organizations as well as with the clinical development, discovery, commercial, regulatory, and public affairs functions within Ultragenyx to inculcate patient insights into Ultragenyx's programs, decision-making and communications. As a senior leader at Ultragenyx, this individual will be responsible for the development and implementation of the internal and external patient engagement vision and strategy required to support clinical-stage programs and commercialization in multiple rare, genetically-defined diseases. This individual is expected to expand and enhance Ultragenyx's Patient Advocacy capabilities and interfaces with patient communities globally as the company broadens its therapeutic focus and advances programs.

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.

• Represent Ultragenyx Pharmaceuticals, Inc. and serve as the primary interface with patient and advocate communities.
• Lead, develop and expand the Patient Advocacy team, aligned with company's mission and growth.
• Develop and implement a comprehensive patient engagement approach and strategy with cross-functional partners (including annual plans and budgets).
• Advise and engage with the CEO, CLO and executive leadership team as needed on Patient Advocacy priorities and recommendations as related to internal program management and external advocacy efforts.
• Become a trusted and credible partner for advocacy organizations and patient communities, ensuring understanding of specific challenges and needs and identifying mutually beneficial opportunities.
• Engage as a member of several cross-functional leadership teams to develop and drive corporate objectives and priorities.
• Champion the patient voice and experience internally among Ultragenyx employees in support of Ultragenyx's patient-centric approach and culture; and use critical patient insights to inform corporate strategies and key decisions (e.g. clinical trial design).
• Update and inform the internal organization on Patient Advocacy trends, news and disease-specific developments.
• Ensure compliance with all internal and external guidelines.

• 15 Years related experience, with at least 10 years of Patient Advocacy leadership experience.
• 6+ years within the biotechnology/pharmaceutical industry or Patient Advocacy environment, with a focus on disease awareness.
• Bachelor's degree is required. An advanced degree in a relevant or clinical discipline highly desired.
• Proven team leadership, development and management skills.
• Strong understanding of drug development process.
• Extremely strong verbal, written, and presentation communication skills and an ability to summarize complex medical and scientific information using terms and concepts that are most relevant and appropriate for patient and advocate audiences.
• Successful track record of cross-functional collaboration, including demonstrated productive relationships with medical, discovery, commercial, communications, and regulatory functions.
• Strategic and tactical planning skills are required.
• Travel: approximate 30% #LI-CS1 #LI-Hybrid