- Develop and manage the ongoing development of a world-class Global Patient Advocacy function with clearly defined objectives, strategies, tactics, and action plans that support patients, families and caregivers affected by rare metabolic diseases, and the healthcare professionals with whom they partner.
- Recommend mid-course corrections to strategies and plans as appropriate, including those cross- functional approaches affecting patients, their disease experience, and outcomes, such as clinical research participation, medical education, advisory involvement, access-related initiatives.
- Provide leadership and support specifically to Global and International teams with local patient advocacy activities and management in establishing and enhancing relationships with key stakeholders, and have the vision to identify related research opportunities, ensure execution of IRB-approved studies, and publication and dissemination of results.
- Provide relevant education, guidance, mentoring, and support to local and global patient advocacy organizations to help maximize their effectiveness, as requested, either directly or through colleague supervision.
- Establish and manage financial budgets related to programs, services, and charitable contributions, aligned with overall corporate fiscal expectations
- Ensure compliance with all relevant regulatory and legal requirements and with Amicus's Code of
- Demonstrate and instill a burning sense of understanding and urgency for patient-first thinking throughout the company.
- Lead by example to ensure effective and cooperative cross-functional teamwork with colleagues at all levels and in all operational and geographic areas throughout the company.
- Provide vision for overall Patient Advocacy healthcare communications strategy and initiatives and manage relationship with agency of record
- BA/BS degree required
- Advanced degree or professional credentials preferred (e.g., Genetic Counselor, Registered Nurse, Patient Advocacy Certification Training/PPALS, Allied Healthcare Professional, Social Worker, Public Health, Public Policy, etc.)
- Minimum of 8-10 years of experience in Patient Advocacy (industry, nonprofit or combination thereof), healthcare communications, or related life sciences fields, preferably with a focus on rare diseases
- Involvement and contribution of advocacy leadership in all aspects of drug development and delivery, including regulatory, access and launch support
- Rare disease experience preferred, knowledge of lysosomal or neuromuscular disorders a plus
- External experience with broader rare disease community and/or biotech industry associations
- Excellent written and verbal communication and presentation skills, with the ability to effectively engage and motivate diverse stakeholders and audiences internally and externally
- Proven track record of building and maintaining strategic partnerships with patient advocacy organizations, professional societies, and key thought leaders
- Deep understanding of the rare disease landscape, including patient needs, healthcare challenges, and patient and policy advocacy opportunities
- Innovative thinker with the ability to develop and execute advocacy initiatives that drive measurable impact and support business objectives, with an emphasis on leading a range of insight-gathering programs and projects that satisfy advocacy and cross-functional educational needs, including patient advisory boards, community roundtables and research
- Successful collaborations with Compliance and Legal colleagues
- Ability to understand complex healthcare environments, regulatory frameworks, reimbursement systems, and healthcare delivery models, to ensure inclusion of patient lived experience and related concerns
- Design and execution of internal education and culture-building initiatives, e.g., Lunch & Learns/disease awareness, new employee onboarding, etc.
- Understanding of and ability to creatively contribute to optimizing intersection of patient advocacy and corporate communications
- Direct people management experience with career development mentorship
- Regular interactions with executive-level colleagues and C-suite
- Implementing Patient Advocacy leadership across the spectrum from development through launch support desirable
- Demonstrated alignment with Amicus Mission-focused Behaviors
- Passion for making a difference in the lives of patients and families affected by rare diseases, with a commitment to patient-centricity and empathy.
- Domestic and some international travel expected; approximately 15-30%
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Description
SVP, Patient & 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.
At Amicus, we strive to transform the lives of people affected by devastating rare conditions through groundbreaking research, innovative and accessible medicines, compassionate care, and advocacy.
Patient & Professional Advocacy has been foundational to the mission and meaning of Amicus Therapeutics since the company's earliest days.
As we continue to advance our industry-leading approach to Patient Advocacy across the enterprise and within the rare disease and biotech ecosystems, we seek an exceptional Senior Vice President of Patient & Professional Advocacy (P&PA) to help shape and direct our efforts in engaging and empowering patients, caregivers, and healthcare professionals.
We are passionate entrepreneurs who aspire to extraordinary patient dedication throughout our business.Our entire team's dedication to those affected by rare diseases is what drives us to truly provide "healing beyond disease.
"
This is a dynamic opportunity for a seasoned Patient Advocacy leader to contribute to developing and executing key strategies through innovative initiatives that enhance awareness, education, and support within the patient and professional communities, in alignment with corporate strategic imperatives.
The ideal candidate combines the flexibility to focus on both the strategic and operational, with a passion for authentic advocacy for patients, families and disease communities, strong relationship-building skills, and a deep understanding of Public Policy and healthcare issues that support equitable access to care for people living with rare diseases.
Reporting directly to the Chief Patient Advocate, this is a position of influence over the direction and deployment of P&PA's efforts and how the team provides strategic partnership and collaboration across multiple cross-functional workstreams to ensure optimal patient-first thinking that touches every aspect of the company's operations and culture of commitment to the rare disease community.
The role involves working with internal and external stakeholders to drive global, regional, and local initiatives that enhance patient experience and advance the field of Patient Advocacy in the life sciences.
The successful candidate must possess energy, creativity, empathy, emotional intelligence, and adaptable thinking prowess.Roles and Responsibilities
Educational Requirements
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 characteristics protected by applicable federal, state or local law.