Senior Director, Head of US Patient and Professional AdvocacySenior Director, Head of US Patient and Professional Advocacy 17 hours ago Be among the first 25 applicants Get AI-powered advice on this job and more exclusive features. 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.

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Position Summary

Amicus Therapeutics is seeking a visionary, collaborative, and mission-driven leader to serve as Senior Director, Head of US Patient and Professional Advocacy (P&PA). Reporting to the Chief Patient Officer, this individual will lead the design and execution of a US advocacy strategy aligned with Amicus’ globally coordinated rare disease mission. As a key member of the US Leadership Team and the Global P&PA Leadership Team, this leader will oversee US-based P&PA programs across all therapeutic areas—ensuring the authentic integration of patient and caregiver perspectives into clinical development, policy, medical affairs, and commercialization. This individual will serve as a visible ambassador of Amicus’ patient-dedicated culture and will be responsible for shaping enterprise-wide advocacy efforts that reflect the lived experience of the rare disease community. This is a highly collaborative role requiring strategic insight, operational acumen, and emotional intelligence. It is ideally suited for an experienced advocacy leader who thrives in a values-driven, fast-paced biotech environment. highly collaborative role requiring strategic insight, operational acumen, and emotional intelligence. It is ideally suited for an experienced advocacy leader who thrives in a values-driven, fast-paced biotech environment. The Senior Director will also play a critical role in establishing and evolving the advocacy strategy for new and emerging pipeline assets, ensuring early integration of patient perspectives from development through to launch readiness.

Role And Responsibilities

Strategic Leadership & Advocacy Integration

Co-develop and lead the execution of a US P&PA strategy aligned with corporate, global, and program-level goals. Lead the development of patient advocacy strategies for new pipeline assets, including early-stage engagement to inform clinical development, insight generation, and strategic positioning for future access and commercialization. Ensure the strategy is responsive to evolving patient needs, stakeholder insights, and opportunities for innovation. Advance Amicus’ culture of extra-patient dedication through visible leadership and enterprise alignment.

Community Partnership & Stakeholder Engagement

Build and sustain trusted partnerships with national and local patient organizations, caregivers, and healthcare professionals across therapeutic areas. Engage external stakeholders via patient advisory boards, insight sessions, and long-term collaborations that reflect a shared commitment to better patient outcomes. Serve as a key corporate representative at major advocacy meetings, forums, and scientific congresses.

Insight Generation & Program Integration

Collaborate closely with Medical Affairs, Market Access, Commercial, and Public Policy to integrate real-world insights into planning and execution. Co-develop disease awareness, education, and co-created content in partnership with advocacy stakeholders. Anticipate and shape advocacy engagement for investigational programs, ensuring a strong foundation for future community partnership, awareness, and patient experience initiatives.

Access, Policy, and Equity

Partner with Government Affairs, Market Access, and Public Policy teams to elevate the patient voice in U.S. policy and access conversations. Support engagement of patient groups with regulatory bodies and public forums to reinforce patient-centered innovation and equitable access. Contribute to development of policy frameworks that promote early diagnosis, treatment access, and healthcare equity.

Cross-functional and Cultural Leadership

Serve as a key member of the US Leadership Team and a trusted internal voice for patient-first thinking. Champion the integration of patient and caregiver perspectives in internal culture-building and employee engagement. Represent the US region within the Global P&PA leadership team, ensuring coordinated execution and knowledge exchange across geographies.

Team & Budget Oversight

Lead and mentor a talented and growing US-based P&PA team, including direct reports across programs. Manage the US P&PA budget and related sponsorships, partnerships, and charitable contributions in alignment with corporate fiscal expectations. Ensure compliance with all legal, regulatory, and ethical standards in the planning and execution of advocacy activities.

Requirements

Educational Requirements

Bachelor’s degree required; advanced degree or professional credential preferred (e.g., genetic counseling, social work, nursing, public health, or related fields). Ongoing professional education in rare disease, policy, or advocacy disciplines considered a plus.

Professional Work Experience Requirements

10+ years of relevant experience in biopharmaceutical patient advocacy, healthcare policy, medical affairs, or public affairs. Deep experience in rare diseases or specialty areas involving complex, lifelong, or multi-systemic conditions. Prior experience leading or shaping advocacy for both marketed and investigational therapies, especially in a launch or early development context. Strong track record of building relationships with national and grassroots patient organizations, professional societies, and key opinion leaders. Experience supporting regulatory and access-related advocacy efforts and working within FDA and payer engagement frameworks.

Experience And Skills

Demonstrated alignment with Amicus Mission Focus Behaviors Passion for rare disease and patient focused Proven ability to integrate patient insights into business strategy, clinical development, and external engagement. Excellent communication and interpersonal skills; capable of translating scientific and policy information for diverse audiences. Strong emotional intelligence, cultural sensitivity, and adaptability in fast-paced, cross-functional environments. Experience with patient insight platforms, advisory boards, and qualitative research. Background in policy engagement, health equity initiatives, or cross-sector coalition work.

Travel

25%, 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 levelNot Applicable Employment type Employment typeFull-time Job function Job functionOther Referrals increase your chances of interviewing at Amicus Therapeutics by 2x Sign in to set job alerts for “Head Professional” roles.Head of Communications, TCS Services Marketing2025 Summer School Head Teachers - Elementary and Middle School Marlboro, NJ $85,280.00-$117,832.00 1 month ago Sr. Claims Specialist - Financial InstitutionsTalent Acquisition Manager, Contract Logistics/3PL Plainfield, NJ $110,000.00-$130,000.00 2 weeks ago Part-Time Program Manager (Roosevelt, NJ)Certified Medical Assistant - FQHC Experience preferredAnatomic Pathology Manager- Laboratory- Full time New Brunswick, NJ $133,924.00-$189,167.00 2 weeks ago We’re unlocking community knowledge in a new way. Experts add insights directly into each article, started with the help of AI.

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