Director, Patient Advocacy & Engagement — Rare Disease

About the role Zevra Therapeutics is a rare disease pharmaceutical company dedicated to transforming the lives of people living with serious and underserved conditions. Zevra’s lead product, MIPYLFFA, is approved for the treatment of Niemann‑Pick disease type C (NPC), and our commitment to patients is foundational to everything we do. Zevra is seeking a highly motivated, hands‑on Director / Senior Director of Patient Advocacy & Engagement to lead and execute patient advocacy efforts across the MIPYLFFA program and future pipeline assets. This individual will play a critical role in ensuring the patient voice is authentically represented and embedded across the organization. This role is responsible for developing, executing, and operationalizing the patient advocacy and engagement strategy as a core component of Medical Affairs. The ideal candidate brings deep experience partnering with patient advocacy organizations, conducting patient‑focused research and insight generation, and translating patient and caregiver experiences into meaningful organizational action. The successful candidate will be a strong external ambassador, trusted partner to advocacy organizations, and an effective internal collaborator who can operate strategically while remaining actively involved in execution. This position reports to the Vice President of Medical Affairs and serves as a key member of the Medical Leadership Team. The position is based on‑site in Boston, MA. What you’ll do Develop and lead the patient advocacy and engagement strategy for MIPYLFFA and the broader Zevra portfolio in alignment with Medical Affairs and enterprise patient‑centric objectives. Execute advocacy initiatives that are meaningful, compliant, and responsive to patient and caregiver needs within rare disease communities. Design and implement frameworks to capture, synthesize, and disseminate patient insights to inform internal decision‑making across medical and commercial functions. External Partnership & Engagement Build, maintain, and lead strong partnerships with patient advocacy organizations, caregivers, patients, key opinion leaders, and policy stakeholders. Identify, develop, and advance collaborative projects, research initiatives, and programs focused on patient experience, unmet needs, and disease burden. Compliantly educate advocacy partners and the patient community about Zevra, its product portfolio, and relevant disease state information. Support disease awareness, patient speaker programs, clinical trial awareness, and policy initiatives consistent with company objectives and compliance standards. Patient‑Centric Integration Champion integration of the patient voice into Zevra’s culture, strategy, and day‑to‑day operations. Oversee and participate in company‑sponsored patient advocacy events that engage employees and reinforce a patient‑first mindset. Serve as a subject‑matter expert and internal consultant on patient advocacy best practices and emerging trends. Cross‑Functional Leadership Collaborate closely with Medical Affairs, Clinical Sciences, Commercial, Regulatory, Legal/Compliance, and Corporate Affairs to ensure alignment and consistency. Interface with Medical Affairs colleagues to coordinate advocacy‑related engagement with KOLs, advisory boards, and medical education initiatives. Represent Zevra externally and internally with professionalism, credibility, and deep knowledge of the rare disease advocacy landscape. Governance & Compliance Ensure all advocacy activities, sponsorships, and partnerships comply with company policies, quality systems, and applicable legal and regulatory requirements. Stay current on evolving advocacy, patient engagement, and industry compliance standards and proactively incorporate best practices into program design and execution. Qualifications Bachelor’s degree required; advanced degree preferred (e.g., MS, RN, LCSW, CGC, MPH, PhD). Minimum of 8+ years of biopharmaceutical or healthcare industry experience, including 4+ years in patient advocacy, patient engagement, or related roles. Demonstrated experience working directly with patient advocacy organizations, rare disease communities, and patient‑focused research or insight generation. Strong understanding of the biotech/pharmaceutical environment, including Medical Affairs, compliance, and cross‑functional collaboration. Proven ability to translate patient insights into actionable strategies and organizational impact. Excellent communication, relationship‑building, and influencing skills. Highly organized, self‑directed, and comfortable operating both strategically and tactically in a growth‑stage organization. Passion for patient‑centered drug development and advocacy, particularly within Abile to travel approximately 40% of time with balance of time on‑site in the Boston office Equal Employment Opportunity Statement Zevra is an equal opportunity employer that is committed to diversity and inclusion in the workplace. We prohibit discrimination and harassment of any kind based on race, color, sex, religion, sexual orientation, national origin, disability, genetic information, pregnancy, or any other protected characteristic as outlined by federal, state, or local laws. #J-18808-Ljbffr Zevra Therapeutics, Inc.