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
Working jointly with the SVP, Patient and Professional Advocacy and Chief, Global Head of Rare Diseases, the Head of Patient & Professional Advocacy, International will lead the development and execution of a globally aligned and comprehensive Patient & Professional Advocacy (P&PA) strategy across Amicus’ International rare disease therapeutic areas, ensuring that the patient voice is strategically and meaningfully integrated enterprise-wide. They are responsible for the oversight of consistent execution regionally and locally in both established and new geographies of operation and need.
This role provides strong leadership to the International P&PA team and will be an active and visible member of the International Leadership Team (ILT). They will be a vocal internal advocate for patient-first thinking. As a leader within the Global P&PA team, the International Head has significant influence on the direction and deployment of the function’s efforts and how strategic partnership and collaboration is present in all cross-functional teams, affiliates and distributor partners, while ensuring the company’s long-standing culture of extra-patient dedication for the rare disease community.
An essential component to these collaborations is a focus on access to healthcare systems and disease management options - the underpinning of Amicus’ Public Policy direction and activities.
The incumbent will work cross functionally to shape strategies that enhance disease awareness, patient outcomes, and support access to care for people living with rare diseases. They will also ensure alignment with legal guidance and industry best practices while maintaining compliance with all relevant policies and codes of conduct.
Key Responsibilities
Strategic Leadership & Patient Advocacy
* Develop and implement an International Patient & Professional Advocacy strategy that aligns with Global, corporate and therapeutic area priorities.
* Cultivate and maintain strong relationships with global, regional, and national patient advocacy organizations, patients, caregivers, and healthcare professionals to ensure meaningful engagement and collaboration.
* Serve as a key internal champion for patient-first thinking, ensuring patient insights inform corporate decision-making across clinical development, medical affairs, and commercial functions.
* Lead initiatives to enhance disease awareness, improve time to diagnosis, and educate patients and caregivers to foster active engagement in disease management.
* Lead and oversee the execution of patient advisory boards, leadership councils, and other forums to gather insights and amplify the patient voice in key decisions.
* Partner with Medical, Public Policy, Regulatory, and Market Access teams to facilitate patient advocacy organization engagement with regulatory authorities, government bodies, and health technology assessment organizations.
* Ensure that the patient perspective is evident in all essential educational and support activities, cross functional approaches, and franchise plans.
* Recommend mid-course corrections to strategies and plans as appropriate, including those cross-functional activities affecting people living with rare diseases.
Cross-Functional Collaboration & Internal Alignment
* Work closely with internal teams to incorporate patient perspectives into new areas.
* Support the development of policy strategies and advocacy initiatives that drive optimal patient care and health equity.
* Ensure alignment of global, regional, and local patient advocacy strategies, customizing approaches to reflect regional differences and specific community needs.
* Advise on the development of educational and awareness materials to ensure they resonate with patient communities and address unmet needs.
* Collaborate with internal stakeholders to ensure patient perspectives are integrated into corporate communications and employee engagement initiatives.
External Engagement & Representation
* Leverage relationships with advocacy thought leaders to build community support for the company’s position on high-level policy and access issues.
* Advance and expand a broad network of contacts with targeted rare disease and umbrella association executives and staff.
* Provide relevant education, guidance, mentoring, and support to international and national patient advocacy organizations or rare disease associations.
* Lead and oversee the International P&PA team’s presence at patient advocacy meetings, scientific congresses, and industry forums.
* Lead or oversee sponsorships, partnerships, and charitable contributions that support advocacy initiatives.
* Identify opportunities for partnerships with advocacy organizations, research institutions, and policymakers to advance the company’s commitment to patient engagement.
Operational Leadership & Compliance
* Lead and help manage the ongoing evolution and execution of a world-class Global Patient Advocacy function.
* Lead by example to ensure highly effective and cooperative cross-functional teamwork.
* Provide strategic guidance and mentorship to team members and regional/country affiliates involved in patient advocacy efforts.
* Ensure compliance with all relevant local regulatory and legal requirements, industry guidance, and with Amicus’ Code of Business Conduct and Ethics.
* Manage budgets for International P&PA operations, ensuring alignment with corporate fiscal expectations.
* Evaluate, contract and manage external professional services providers as required.
Requirements
* Significant and relevant experience in the pharmaceutical/biotech industry, ideally with experience as a patient advocate.
* International life sciences experience in the rare disease/orphan drug space encompassing patient advocacy.
* Strong track record of building successful relationships with key thought leaders.
* Professional experience/strong working knowledge of all stages of drug development and product lifecycle.
* In-depth understanding of national healthcare systems, clinical trials process, drug development process, and key health policy issues.
* Ability to understand and effectively communicate scientific information for a lay audience.
* Community relations background and experience creating or managing corporate social responsibility and philanthropic initiatives.
* Demonstrated leadership skills and a track record of prioritising and developing communications and advocacy strategies.
* Demonstrable ability to work collaboratively as a team player.
* Strong self-starter combined with a high energy level and emotional intelligence.
* Strong strategic thinking skills.
Educational Requirements
* Undergraduate degree required.
* Advanced degree or professional credentials preferred.
Travel
* 15-35% travel, domestic, EU and international.
We respect and celebrate the diversity of our people, their backgrounds and experiences and provide equal opportunity for all. Amicus is an Equal Opportunity Employer.
Seniority level: Executive
Employment type: Full-time
Job function: Other
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