Director, Patient Advocacy – Inherited Metabolic Disorders

This is a fully remote position, open to applicants in United States.

📋 Description

• Develop and implement the U.S. IMD patient advocacy strategy in alignment with organizational goals, business priorities, and community needs.

• Establish and nurture relationships with patient advocacy organizations, community leaders, caregivers, and individuals affected by IMD.

• Act as the primary advocate for U.S. IMD patients across Medical Affairs, Commercial, Market Access, and Regulatory teams.

• Convert community insights into practical recommendations throughout the product lifecycle.

• Lead initiatives that enhance the voices of patients and caregivers within the engagement process.

• Embed patient advocacy strategies into evidence generation, educational efforts, policy development, and commercialization activities.

• Keep track of the advocacy, healthcare, and policy landscape to identify trends, unmet needs, opportunities, and risks.

• Assist in patient-focused research, advisory boards, community listening initiatives, and various insight-generation programs.

• Ensure all activities adhere to legal, regulatory, compliance, and industry standards.

• Represent the organization at advocacy meetings, scientific congresses, community events, and industry forums.

• Set and track KPIs to measure the effectiveness and impact of advocacy initiatives and partnerships.

⛳️ Requirements

• A Bachelor’s degree is required; an advanced degree in public health, healthcare, life sciences, public policy, communications, or a related field is preferred.

• Over 8 years of experience in patient advocacy, patient engagement, public affairs, healthcare, rare diseases, or a related field, including the creation and execution of advocacy strategies.

• Proven capability to build and maintain trusted partnerships with patient advocacy organizations, community leaders, and other external stakeholders.

• Strong strategic thinking and business insight, with experience in transforming patient and caregiver insights into actionable organizational strategies.

• Exceptional communication, presentation, and stakeholder management skills, with the ability to influence at all levels of an organization.

• Experience leading cross-functional initiatives and collaborating effectively across Medical Affairs, Clinical Development, Commercial, Market Access, and Regulatory teams.

• Familiarity with healthcare compliance requirements and industry regulations related to interactions with patient advocacy organizations.

• Preferred: experience supporting rare diseases, genetic disorders, lysosomal storage disorders, or MPS-focused programs and communities.

• Preferred: solid understanding of the drug development lifecycle and opportunities for patient engagement from early research to commercialization.

• Preferred: existing relationships within the rare disease and patient advocacy community.

• Preferred: experience in designing and implementing patient insight generation activities, including advisory boards, community listening sessions, and patient-focused research.

• Preferred: experience working in a global or matrixed biopharmaceutical organization.

• Preferred: proven success in promoting patient-centered initiatives that impact policy, research, access, or care for rare disease communities.

🏝️ Benefits

• Competitive salary and performance bonuses.

• Comprehensive health, dental, and vision insurance.

• Generous paid time off and holiday policies.

• Opportunities for professional development and career advancement.

• Supportive and inclusive work environment.