Executive Director

Core responsibilities:

• Provide day-to-day management of the organization, ensuring operational continuity and financial oversight
• Provide executive oversight of core programming, including educational content, webinars, online communities, and in-person events
• Collaborate with a committed Board of Directors to implement the organization's 2026 operating plan
• Maintain strong relationships with key stakeholders, including pharmaceutical partners, clinicians, patients, and peer organizations

This role creates positive change by leading a nonprofit that advocates for patients, builds community, influences health policy, and serves as a trusted resource for people with narcolepsy and idiopathic hypersomnia, delivering high-impact programming at critical inflection points in their lives.

Required qualifications:

• 5–10+ years of nonprofit leadership experience in lean environments
• Experience working with or around patient communities, health advocacy, or rare disease
• Strong operational judgment and ability to run tight, steady systems without overcomplicating
• Clear communicator who knows how to build trust across diverse stakeholders

Compensation and benefits:

• Salary: $130,000–$145,000
• 401(k)
• Health Reimbursement Arrangement (HRA covering ~70% of healthcare costs)
• PTO
• Remote work location
• 3–5 trips per year including conferences

Narcolepsy Network is the original nonprofit serving people with narcolepsy and idiopathic hypersomnia in the U.S., advocating for patients, building community, influencing health policy, and standing as a trusted resource in the sleep space for nearly 40 years.