Director, Patient Advocacy (USA Rare Disease)
About The Position
As Alfasigma continues to strengthen its leadership position in hepatology, we are seeking a Director, Patient Advocacy, to serve as a strategic leader and champion for the patient voice across the organization. This individual will bring deep expertise in patient advocacy, with a strong preference for experience in rare diseases and hepatology, and will ensure that patient perspectives remain central to corporate, clinical, medical, marketing, and commercial decision-making. The Director of Patient Advocacy will develop and lead Alfasigma’s strategy and engagement with patient advocacy organizations, patient communities, caregivers, and key external stakeholders to advance initiatives that improve the lives of individuals affected by Primary Biliary Cholangitis (PBC) and other rare liver diseases. This individual will be responsible for developing and executing a comprehensive patient advocacy strategy, building trusted relationships with advocacy leaders at the national and global level, and identifying opportunities to elevate patient needs, reduce barriers to care, and improve disease awareness. The ideal candidate will possess a strong understanding of the rare disease patient journey, including diagnosis, treatment access, caregiver burden, and long-term disease management. They will have demonstrated success partnering with advocacy organizations, incorporating patient insights into organizational strategy, and collaborating effectively across Medical Affairs, Clinical Development, Market Access, Marketing, and Commercial teams. Given Alfasigma’s commitment to patient centricity and integrity, this role requires exceptional relationship-building capabilities, strategic thinking, and communication skills. The successful candidate will thrive in a dynamic environment, engage confidently with executive leadership, and serve as a credible representative of Intercept/Alfasigma within the rare disease and hepatology advocacy communities.
Requirements
- Bachelor’s degree, Master’s Degree highly preferred
- 8+ years of experience in patient advocacy, patient engagement, patient support, community relations, or related functions within the pharmaceutical, biotechnology, or healthcare sectors
- Ability to travel as needed to patient advocacy meetings, scientific congresses, and community events (up to 25%, including overnight and weekends)
- Ability to work onsite in the Morristown, NJ office on a hybrid basis required (minimum 3 days per week)
- Demonstrated understanding of the rare disease patient journey, including challenges related to diagnosis, treatment access, reimbursement, adherence, caregiver burden, and quality of life
- Deep understanding of patient advocacy, patient engagement, and patient-centered healthcare, with demonstrated experience supporting rare disease communities; hepatology or gastroenterology experience strongly preferred
- Established track record of building trusted relationships with patient advocacy organizations, patient leaders, caregivers, and other key external stakeholders
- Strong knowledge of current compliance, legal, regulatory, and industry requirements governing interactions with patients, caregivers, healthcare professionals, and patient advocacy organizations within the pharmaceutical and biotechnology industries
- Ability to gather and communicate patient and caregiver insights to inform organizational strategy, clinical development programs, disease awareness initiatives, and patient support services
- Proven ability to develop and execute strategic patient advocacy plans that align patient needs and to lead cross-functional initiatives/drive alignment across Medical Affairs, Clinical Development, Corporate Affairs, Market Access, Commercial, Legal, and Compliance functions
- Exceptional strategic thinking, project management, and organizational skills, with the ability to manage multiple priorities while maintaining adherence to compliance standards
- Excellent communication, presentation, stakeholder management, and partnership-building skills
- Budgeting, planning, and operational management skills, including experience managing grants and sponsorships
Nice To Haves
- Master’s Degree
- Experience in rare diseases and hepatology
- Hepatology or gastroenterology experience
Responsibilities
- Develop and execute a patient advocacy strategy that reflects the evolving needs of individuals living with PBC and other rare liver diseases
- Establish and maintain strategic partnerships with national, regional, and global patient advocacy organizations, with a focus on rare disease and hepatology communities
- Serve as the internal expert on patient and caregiver perspectives, ensuring patient insights are incorporated into clinical development, medical affairs initiatives, patient support programs, marketing materials, market access activities, and commercial strategy
- Identify and communicate unmet needs, barriers to diagnosis, treatment access challenges, and quality-of-life considerations impacting patients with PBC and rare liver diseases
- Lead, attend, and gather patient community insights through advocacy partnerships, advisory boards, patient meetings, and community engagement activities
- Collaborate with cross-functional teams to develop patient-centered educational resources, disease awareness initiatives, and support programs that address the needs of patients
- Represent Alfasigma within the rare disease and hepatology advocacy communities, serving as a trusted partner and ambassador for the organization
Benefits
- Competitive salary
- Comprehensive benefits
- Extensive opportunities for professional growth and development
- 401(k) plan with company match
- Rewards and recognition program
- Health care benefits (medical, prescription drugs, dental, and vision insurance)
- Short and long-term disability coverage provided
- Plan coverage for domestic partners
- Paid parental leave benefits and adoption assistance
- Tuition reimbursement assistance
- A generous Paid Time Off program that includes 20 vacation days, 11 holidays, 4 personal days, and 2 volunteer days per calendar year
- Numerous well-being and work/life programs
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What This Job Offers
Job Type
Full-time
Career Level
Director
