Senior Manager, Patient and Professional Advocacy

Amicus Therapeutics is a global, patient-dedicated biotechnology company focused on discovering, developing, and delivering high-quality medicines for people living with rare metabolic diseases.
Position SummaryAmicus Therapeutics is seeking an experienced, community-minded, and strategic individual to serve as Senior Manager, Patient and Professional Advocacy for Fabry disease in the United States. In this role, you will work closely with the Senior Director of US P&PA and cross-functional colleagues to co-create and lead the implementation of patient and professional engagement strategies that elevate the voice of the Fabry community and ensure their lived experience remains an essential part of our culture, is integrated throughout the organization, and informs planning and decision-making.
This position serves as a critical external-facing liaison to patients, patient organizations, families, caregivers, and community stakeholders, while also playing an influential internal role in shaping the integration of patient perspectives into key business decisions. The ideal candidate will bring strong experience in community engagement, a deep understanding of the rare disease environment, and the ability to translate insights into meaningful, strategic action.

Role and Responsibilities

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Strategic Leadership & Program Implementation
• Partner with the Senior Director and broader cross-functional teams to co-develop and refine the US Fabry patient and professional advocacy strategy, ensuring alignment with global objectives and program milestones.
• Lead the implementation of U.S.-based Fabry advocacy initiatives that reflect community priorities and foster long-term, trust-based relationships.
• Identify areas for deeper engagement, insight generation, or collaboration and lead development of appropriate tactics and resources to support these efforts.

Community Engagement & Partnership Building
• Serve as the primary liaison to Fabry-focused U.S. patient organizations, advocates, families, and community stakeholders, cultivating relationships that reflect Amicus’ long-standing commitment to meaningful partnership.
• Represent Amicus at key external meetings, including patient organization events, scientific congresses, and community listening sessions.
• Facilitate or co-lead patient and caregiver advisory boards, roundtables, and insight-generating discussions to ensure the community’s perspective informs Amicus’ work.

Cross-Functional Collaboration
• Work collaboratively with Medical Affairs, Market Access, Corporate Communications, Public Policy, and other stakeholders to ensure community insights are integrated into program planning, external communications, policy agendas, patient support initiatives, access strategies, etc.
• Partner with and Legal/Compliance to support appropriate engagement activities.
• Contribute to the development of educational and awareness materials, ensuring content is informed by, and resonates with, the Fabry community.

Insights, Operations & Governance
• Track and communicate evolving community priorities, emerging leaders, and relevant trends in the Fabry space to inform internal strategy.
• Oversee specific elements of project budgets and ensure appropriate documentation, reporting, and internal coordination in line with compliance and legal frameworks.
• Contribute to internal knowledge sharing to build broader organizational understanding of the Fabry patient experience.

Educational Requirements

• Bachelor’s degree required; advanced degree or professional training in life sciences, public health, genetic counseling, social work, or related fields preferred.

Professional Work Experience Requirements

• Minimum of 6–8 years of experience in patient advocacy, healthcare engagement, medical affairs, or community relations, preferably within the biopharmaceutical or rare disease space.

Experience and Skills

• Demonstrated alignment with Amicus Mission Focus Behaviors
• Passion for rare disease and patient focused
• Demonstrated experience building trusted relationships with patient advocacy organizations, caregivers, and healthcare professionals.
• Experience co-creating strategies and leading execution of advocacy initiatives across the development or commercial lifecycle.
• Strong communication and interpersonal skills with the ability to represent complex scientific or clinical topics in an accessible way.
• Familiarity with the regulatory and compliance environment surrounding advocacy and external engagement in the U.S.
• Direct experience in Fabry disease or lysosomal storage disorders strongly preferred.
• Understanding of the rare d