Accountabilities:

• Develop and execute patient advocacy strategies and engagement plans across assigned therapeutic areas, aligning advocacy priorities with broader business and development objectives.
• Serve as a primary relationship owner for US patient advocacy organizations, building trusted, long-term partnerships and understanding evolving community needs.
• Balance advocacy priorities across pipeline and marketed indications, translating therapeutic-area strategies into actionable national and local engagement plans.
• Represent the organization at patient events, conferences, panels, and other community engagements, while enabling cross-functional colleagues to effectively engage with patient communities.
• Gather, synthesize, and communicate patient and community insights to inform internal teams, development milestones, market engagement, and patient experience initiatives.
• Act as a strong internal voice for patients, identifying needs and opportunities across the broader organizational ecosystem and helping teams incorporate the patient perspective into decision-making.
• Partner with Patient Services and other functions to support patient onboarding and create a consistent, patient-centered experience.
• Build and maintain deep knowledge of relevant disease states, patient experiences, treatment landscapes, and products to effectively support community needs.
• Establish measurement frameworks for advocacy activities and assess the impact of local, regional, and national events and programs.
• Manage operational aspects of advocacy activities, including compliant event execution, sponsorships, budgeting, and related processes.
• Own advocacy strategies for assigned indications from development through commercialization, ensuring alignment through clear frameworks, standardized processes, and effective ways of working.
• Travel regularly to build external relationships and support priority patient and community events, including occasional evening and weekend engagements.

Requirements

• Bachelor’s degree required; an advanced degree in a relevant field is preferred.
• At least 10 years of industry or related professional experience, with demonstrated expertise in patient advocacy, rare disease, healthcare, or a closely related environment.
• Proven success developing and implementing innovative patient advocacy programs, particularly for rare diseases and minority or underserved patient populations.
• Demonstrated track record of establishing and maintaining an advocacy strategy for a specific indication or therapeutic area.
• Experience engaging directly with rare-disease patient communities and understanding applicable compliance requirements.
• Proficiency with Veeva and experience operating within compliant healthcare or pharmaceutical environments.
• Strong understanding of patient needs and a genuine commitment to improving the experience of people living with rare diseases, their caregivers, and communities.
• Exceptional communication and presentation skills, with the ability to listen actively, influence stakeholders, synthesize insights, and communicate clearly in both written and verbal formats.
• Ability to integrate the patient voice across the end-to-end product lifecycle and recognize when, where, and how patient insights can have the greatest impact.
• Strong cross-functional collaboration skills and the ability to build productive relationships across diverse internal and external stakeholder groups.
• Strategic, adaptable, and highly organized, with the ability to balance competing priorities across pipeline and commercialized programs.
• Willingness and ability to travel up to 50% and participate in occasional evening or weekend patient events; a flexible schedule will be supported to accommodate these commitments.

Benefits

• Remote-based position within the United States.
• Competitive compensation with eligibility for short-term and long-term incentive programs, subject to applicable plan terms.
• Comprehensive benefits package including health benefits and retirement savings programs.
• Opportunity to contribute directly to patient advocacy strategy and the integration of patient perspectives into the product lifecycle.
• High-visibility role with significant interaction across cross-functional teams and external patient advocacy organizations.
• Meaningful opportunity to support rare-disease and underserved patient communities.
• Inclusive and collaborative working environment focused on innovation, patient impact, and professional growth.
• Travel and flexible scheduling support for patient events and community engagement activities.