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Executive Director, Global Patient Advocacy
New York, NY

Company Background
At Neurogene, we are working to provide medicines to improve the lives of neurologically impaired children and their families. We envision a world in which all families have access to genetic medicines, even if the disorder is exceedingly rare. For children, our goal is to enable them to have a healthier future. For families, we want to make their lives better by easing the challenges of caring for someone with a devastating neurological disorder. As an employee of Neurogene, you will be part of a culture helping to make this dream a reality, collaborating with people in a start-up environment, whose mission is to improve the lives of the patients we serve and make the world a better place.

Position Overview
The Executive Director, Global Patient Advocacy is a position central to Neurogene’s mission, which requires demonstrating Neurogene’s deep commitment to patients and their caregivers, educating global communities, and developing strong relationships with patient foundations across Neurogene’s pipeline. The qualified person will develop, implement and lead patient advocacy strategy and programs, and will be responsible for positioning Neurogene as a preferred partner for patient organizations within our therapeutic area. In addition, this individual will represent the patient perspective as an active participant in cross-functional teams. This position reports to the Founder and CEO.

Accountabilities and Responsibilities

• Define the mission and vision of the global patient advocacy team and develop overall advocacy strategy for Neurogene within our therapeutic areas of interest
• Develop and implement a patient advocacy strategy that will support all stages of development in collaboration with key functions, including clinical development, clinical operations, regulatory, business operations and medical affairs
• Provide key insights to cross-functional teams on the pulse of the patient community to inform strategic planning
• Ensure patient community feedback is incorporated into critical drug development and commercialization decisions through executing caregiver advisory boards and other patient engagement activities
• Define and execute patient engagement strategy, inclusive of a digital/social media presence, to enable excellent education to caregivers on general disease and gene therapy awareness (including genetic testing and newborn screening), the drug development process, natural history studies, clinical trials, and other areas important to our therapeutic focus
• Design and create content that will contribute to the effectiveness and success of patient advocacy plan
• Create operating plans related to advocacy opportunities for our product candidates as well as other relevant company initiatives
• Ensure Neurogene’s commitment to patients is visible at relevant medical and caregiver focused conferences
• Identify and coordinate caregiver presentations for all Neurogene employees to ensure Neurogene employees understand the patient communities we serve
• Work compliantly in interactions with patient advocates, patients, families, caregivers, and other relevant parties
• Provide to senior management caregiver attitudes toward and understanding of gene therapy
• Plan and implement caregiver advisory boards
• Identify and develop caregiver leaders to support all Neurogene programs

Minimum Requirements
• Bachelor’s degree in a relevant scientific or clinical discipline. Advanced degree preferred (e.g., MD, PharmD, MSN, PhD). Equivalent combination of education and applicable job experience may be considered.
• 12+ years of progressive work experience in the pharmaceutical/biotech industry and/or a related patient-focused organization
• 3+ years of patient advocacy experience in rare disease required
Skills & Knowledge
• Highly motivated leader with an understanding of rare disease, health care, biopharmaceutical industry business needs, drug development, and commercialization
• Demonstrated leadership and collaboration skills with a proven ability to build relationships with diverse groups of people and audiences.
• Ability to build and influence effective working relationships with key internal stakeholders, including Clinical Development and Medical Affairs
• Proficient in event planning, industry standards, and regulations, with a strong awareness of emerging trends around patient-centered research and technology, patient experience, and patient-reported outcomes
• Experience in social media-based patient education
• Ability to summarize complex medical and scientific concepts using basic terms to successfully communicate to patient/advocate audiences
• Excellent verbal, written, and presentation communication skills, and adept at creating and communicating a clear vision and purpose

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