Senior Manager, Patient & Professional Advocacy – Fabry Disease

Amicus Therapeutics; Princeton (NJ); On-site; USD 80,000 - 90,000; Full time

Job summary

A leading biotechnology company dedicated to rare disease treatment seeks a Senior Manager for Patient & Professional Advocacy focused on Fabry disease. The role demands a strategic leader to enhance community engagement, drive advocacy initiatives, and collaborate across teams. Ideal candidates will possess extensive advocacy experience, strong interpersonal skills, and a commitment to community-focused strategies.

Qualifications

• Experience in patient advocacy or healthcare engagement (6–8 years preferred).
• Knowledge of rare disease environment and advocacy strategies.

Responsibilities

• Co-develop and refine advocacy strategy for Fabry disease.
• Lead U.S.-based advocacy initiatives and cultivate community relationships.
• Track community priorities to inform internal strategy.

Skills

Community engagement

Interpersonal skills

Strategic planning

Communication

Emotional intelligence

Education

Bachelor's degree

Advanced degree in life sciences or public health

Job description

Senior Manager, Patient & Professional Advocacy – Fabry Disease

Senior Manager, Patient & Professional Advocacy – Fabry Disease

19 hours ago Be among the first 25 applicants

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 Summary

Amicus 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

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 disease patient journey, diagnostic and access challenges, and the role of advocacy in informing clinical development and commercialization.
• High emotional intelligence, cultural sensitivity, and the ability to navigate evolving external environments with integrity and credibility.
• A strong sense of initiative and ownership, with the ability to operate independently while collaborating closely across teams
  
  

Travel

• 15–30%, primarily domestic
  
  

Please note: This is not an exhaustive list of job responsibilities. A detailed job description will be provided during the application process.

Amicus is an Equal Opportunity Employer and will judge all applicants based on their qualifications for the job, without regard to race, colour, sex, religion, national origin, age, disability, sexual orientation, gender identity, protected veteran, disability status or any other characteristics protected by applicable federal, state or local law.

We respect and celebrate the diversity of our people, their backgrounds and experiences and provide equal opportunity for all. Our unique experiences, backgrounds and range of cultural perspectives enrich how we approach opportunities, pushing ideas as far and as fast as possible with patients always our top priority. Employee expertise, intelligence, and creativity drives our innovation, and our passion and commitment to excellence. Our “Three Pillars of DEI” are interwoven into our Amicus culture and expands one person, one word, and one act at a time. For our employees, these three pillars are a touchstone for inspiration, guidance, and encouragement.

Seniority level

• Seniority level

  Mid-Senior level

Employment type

• Employment type

  Full-time

Job function

• Job function

  Other

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