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Director, Patient Advocacy & Engagement EMEA

Ultragenyx

Job Location:

Berlin - Germany

Monthly Salary: Not provided by the employer

Posted: 6 August 2026 (30+ days ago)

Application Deadline: 16 November 2026

Vacancies: 1 Vacancy

Job Summary

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 achieve this goal our vision is to lead the future of rare disease medicine. For us this means going where other biopharma companies wont 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 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 andpersonally come join our team.

Position Summary:

ultradedicated Your biggest challenges yield rare possibilities

We are looking for anempathetic raredisease science enthusiast to join our Global Patient Advocacy & Engagement to the Vice President of Patient Advocacy & Engagement the Director EMEA Region will collaborate to develop and execute a regional strategy focused on Ultragenyxs in-line indications and prepare for our next wave of innovation.

Focusing on building trust and advocacy to effect change the Director will work extensively withpatientscaregiversandadvocacyorganizations and key Global Regional and National teams across Ultragenyx.

Work Model:

Remote: Officially documented as working full-time from home with travel to Ultragenyxs offices or other locations on occasion as needed.

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

Responsibilities:

Build and steward authentic relationships based on respect understanding and advancing patient focused priorities.
Embed patient and caregiverperspectiveand strategic insights from our communities across business strategy accelerating existing efforts andidentifyingnew opportunities to meaningfully partner.
Understand and navigate internal stakeholder engagement ensuring plans reflect cross functional engagement;facilitatingthe compliant exchange of complex scientific information related to Ultragenyx areas of research productdevelopmentand commercialization.
Partner closely with Government Affairs Communications and Regulatory to ensureappropriate patientcaregiverand advocacy leader awareness of and engagement with regulatory agencies and policymakers on issues of access and reimbursement.
Demonstrate leadership within the Patient Advocacy team across Ultragenyx and externally with the goal of fostering a best-in-class patient advocacy function.
Oversee thepatientadvocacy budget ensuring company resources are used efficiently and effectively including the management of external strategic partners.

Requirements:

10 years within the biotechnology/pharmaceutical industry
8 years of patient advocacy experience; rare disease experience preferred
Bachelors degree is
Travel expected to be between 30%.

#LI-CK1 #LI-Remote #LI-Hybrid

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 .

See ourCCPA Employee and Applicant Privacy Notice.

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It is unlawful in Massachusetts to require or administer a lie detector test as a condition of employment or continued employment. An employer who violates this law shall be subject to criminal penalties and civil liability.

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:.

Required Experience:

Director

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