Director, Patient Advocacy & Engagement - EMEA

About Ultragenyx

Ultragenyx is devoted to becoming a leader in rare disease medicine by challenging conventional approaches and providing life-changing therapies at reasonable prices. They strive to build a collaborative ecosystem that meets patient needs innovatively while fostering an inclusive culture dedicated to employees' growth and well-being.

Position Summary

The Director of Patient Advocacy & Engagement for the EMEA region will report to the Vice President and help develop and implement a regional strategy centered on the company's current indications and upcoming innovations. This role emphasizes building trust and advocacy by collaborating closely with patients, caregivers, advocacy groups, and global and regional teams.

Work Model

• Primarily remote work with occasional travel to company offices or other sites.
• Flex option available requiring onsite presence 2-3 days weekly or more as business demands.

Key Responsibilities

• Establish and maintain genuine, respectful relationships focused on patient priorities.
• Integrate patient and caregiver perspectives into business strategies and identify new collaboration opportunities.
• Effectively navigate internal stakeholder engagement and facilitate compliant exchange of scientific information related to Ultragenyx's research and commercialization.
• Collaborate with Government Affairs, Communications, and Regulatory teams to promote patient and advocacy leader awareness and involvement with regulatory and policy matters concerning access and reimbursement.
• Provide leadership within the advocacy team and across the organization to cultivate a top-tier patient advocacy function.
• Manage the patient advocacy budget and oversee external strategic partner relationships to maximize resource efficiency.

Qualifications

• Minimum of 10 years of experience in the biotechnology or pharmaceutical sectors.
• At least 8 years of experience focused on patient advocacy, preferably within rare disease.
• Bachelor’s degree required.
• Willingness to travel approximately 30% of the time.

Employee Benefits

• Generous vacation and company-observed public holidays.
• Volunteer days.
• Long-term incentives and employee stock purchase programs or equivalents.
• Wellbeing benefits.
• Fitness reimbursement.
• Tuition sponsorship opportunities.
• Professional development plans.
• Benefits differ depending on region and country.

Equal Opportunity Employer

Ultragenyx prohibits discrimination on various legal bases and provides reasonable accommodations for protected statuses and disabilities. Candidates may request accommodations during the hiring process by contacting Talent Acquisition.

Additional Information

Recruiter inquiries and unsolicited resumes are managed exclusively through the Human Resources Department, and direct outreach to employees or managers for recruitment purposes is discouraged and may affect future relationships.