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
1. Develop and implement an International Patient & Professional Advocacy strategy that aligns with Global, corporate and therapeutic area priorities.
2. Cultivate and maintain strong relationships with global, regional, and national patient advocacy organizations, patients, caregivers, and healthcare professionals to ensure meaningful engagement and collaboration.
3. 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.
4. Lead initiatives to enhance disease awareness, improve time to diagnosis, and educate patients and caregivers to foster active engagement in disease management, often as co-creation with the patient community.
5. Lead as appropriate and oversee the execution of patient advisory boards, leadership councils, and other forums to gather insights and amplify the patient voice in key decisions.
6. 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.
7. Ensure that the patient perspective is evident in all essential educational and support activities, cross functional approaches, franchise plans.
8. Recommend mid-course corrections to strategies and plans as appropriate, including those cross-functional activities affecting people living with rare diseases, their experience and outcomes, such as clinical research participation, advisory involvement, access-related initiatives, disease awareness and educational activities.
Cross-Functional Collaboration & Internal Alignment
1. As Amicus’ pipeline grows, work closely with internal teams to incorporate patient perspectives into new areas, consistent with “the Amicus way.”
2. Support the development of policy strategies and advocacy initiatives that drive optimal patient care and health equity.
3. Ensure alignment of global, regional, and local patient advocacy strategies, customizing approaches to reflect regional differences and specific community needs.
4. Advise on the development of educational and awareness materials to ensure they resonate with patient communities and address unmet needs.
5. Collaborate with internal stakeholders to ensure patient perspectives are integrated into corporate communications and employee engagement initiatives.
External Engagement & Representation
1. Leverage relationships with advocacy thought leaders to build community support for the company’s position on high-level policy and access issues.
2. Advance and expand a broad network of contacts with targeted rare disease and umbrella association executives and staff and lead relationship building and activities of mutual interest with these stakeholders, as well as model such advancement for direct reports.
3. Provide relevant education, guidance, mentoring, and support to international and national patient advocacy organizations or rare disease associations to help maximize their effectiveness, directly with community leadership as appropriate.
4. Lead as appropriate and oversee the International P&PA team’s presence at patient advocacy meetings, scientific congresses, and industry forums to maintain Amicus’ leadership in the field of Patient Advocacy.
5. Lead or oversee sponsorships, partnerships, and charitable contributions that support advocacy initiatives and align with Global and corporate objectives, as well as fiscal expectations.
6. Identify opportunities for partnerships with advocacy organizations, research institutions, and policymakers to advance the company’s commitment to patient engagement.
Operational Leadership & Compliance
1. Lead and help manage the ongoing evolution and execution of a world-class Global Patient Advocacy function with clearly defined objectives, strategies, tactics, and action plans as connected to International Amicus operations and geographies.
2. Lead by example to ensure highly effective and cooperative cross-functional teamwork with colleagues at all levels and in all operational and geographic areas throughout the company.
3. Provide strategic guidance and mentorship to team members and regional/country affiliates involved in patient advocacy efforts.
4. Ensure compliance with all relevant local regulatory and legal requirements, industry guidance, and with Amicus’ Code of Business Conduct and Ethics and model integrity for all teammates.
5. Demonstrate and instill a burning sense of understanding and urgency for patient-first thinking throughout the company, in alignment with mission-driven behaviors.
6. Manage budgets for International P&PA operations, ensuring alignment with corporate fiscal expectations.
7. Evaluate, contract and manage external professional services providers as required.
Requirements
1. Significant and relevant experience in the pharmaceutical/biotech industry, ideally with experience as a patient advocate working within a small-mid-size, entrepreneurial and patient-focused culture.
2. International life sciences experience in the rare disease/orphan drug space encompassing patient advocacy (specific knowledge of lysosomal disorders is beneficial).
3. Strong track record of building successful relationships with key thought leaders, specifically with patient advocacy organization professional and volunteer leadership (disease-specific and broad), healthcare providers and industry associations by engaging stakeholders and gaining patient community support for corporate goals, leveraging advocate communication vehicles, enhancing disease awareness and effectively and sensitively navigating community politics.
4. Professional experience/strong working knowledge of all stages of drug development and product lifecycle, including experience with the intrinsic role that patient community partnerships contribute to these processes.
5. In-depth understanding of national healthcare systems, clinical trials process, drug development process, and key health policy issues, especially those pertaining to regulatory frameworks, expanded access, and patient access/reimbursement challenges and opportunities.
6. Ability to understand and effectively communicate (written and oral) scientific information for a lay audience, including through the conception, creation and distribution of educational resources across multiple platforms, including online content, and for presentations.
7. Community relations background and experience creating or managing corporate social responsibility and philanthropic initiatives.
8. Demonstrated leadership skills and a track record of prioritising and developing communications and advocacy strategies/campaigns to address the company’s needs.
9. Demonstrable ability to work collaboratively as a team player in a multi-cultural, dynamic, and fast-moving environment.
10. Strong self-starter combined with a high energy level and equally as high emotional intelligence and compassion.
11. Strong strategic thinking skills, particularly as it relates to long-term stakeholder relationship management, creating communications, patient and policy advocacy plans.
Educational Requirements
1. Undergraduate degree required.
2. Advanced degree or professional credentials preferred (genetic counselor, registered nurse, allied healthcare professional, social worker, etc.).
3. Professional or industry educational training a plus.
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. 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.
Amicus is an Equal Opportunity Employer and will judge all applicants based on their qualifications for the job, without regard to race, color, sex, religion, national origin, age, disability, sexual orientation, gender identity, protected veteran, disability status or any other characteristic.
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