Demo

Director, Patient Advocacy

Ultragenyx
Novato, CA Full Time
POSTED ON 3/8/2025
AVAILABLE BEFORE 6/9/2025

Why Join Us?

Scroll down to find the complete details of the job offer, including experience required and associated duties and tasks.

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 :

ultra dedicated - Your biggest challenges yield rare possibilities

Reporting to Executive Director, Patient Advocacy, the Director will be responsible for leading patient advocacy and engagement for multiple assets that will drive global awareness, support regulatory, program, and launch readiness strategies, and embed the patient and caregiver voice into Ultragenyx from discovery to commercialization. The incumbent will work cross-functionally with Corporate Affairs, Program Teams, Medical Affairs, Clinical Development / Operations, Commercial, Legal, Compliance, & Regulatory.

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 :

  • Develop and execute global patient advocacy strategy across different stages of asset development in key markets for Ultragenyx
  • Implement strategies to drive disease awareness, clinical trial awareness, and support important regulatory milestones
  • Build trustful relationships with patient advocacy groups and community leaders to ensure productive partnerships and alliance
  • Develop Caregiver Leadership Councils and other forums to support corporate objectives and understand community unmet needs
  • Identify opportunities and build strategic solutions and initiatives to address internal and external challenges
  • Manage patient advocacy events and engage employees to advocate for the patient voice and experience
  • Represent Ultragenyx at scientific conferences and forums to support partnerships and outcomes for patients
  • Lead and execute communications plan with patient advocacy organizations, including the development of community letters, company updates, and presentation materials
  • Build and maintain Patient Advocacy annual plan and budget in alignment with cross-functional colleagues
  • Ensure compliant, ethical, and transparent stakeholder engagement and communication

Requirements :

  • 8 years of industry experience and 5 years of external engagement experience
  • Excellent communications skills (including written and oral) and strong interpersonal skills that can build and progress relationships internally as well as externally
  • Experience developing and managing annualized patient advocacy plans and budgets
  • Solid understanding of drug development, regulatory, and commercial processes at a global level
  • Knowledge of Legal, Regulatory, & Compliance guidelines for engaging patient advocacy communities
  • Experience developing and executing patient advocacy strategy with tangible results that align corporate goals with community unmet needs. #LI-DNI
  • 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$220,600—$272,500 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 .

    See our CCPA Employee and Applicant Privacy Notice.

    See our Privacy Policy.

    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.PDN-9d8e037b-9b54-471b-884f-c51ef12bfd9e

    Salary : $220,600 - $272,500

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