Executive Director

Please note: you must be signed in to a Google account to complete the application. If you have trouble accessing the form, please email kharper@narcolepsynetwork.org directly.

About Narcolepsy Network

Narcolepsy Network is the original nonprofit serving people with narcolepsy and idiopathic hypersomnia in the U.S. For nearly 40 years, we’ve advocated for patients, built community, influenced health policy, and stood as a trusted resource in the sleep space. We are now entering a new chapter—focused, streamlined, and committed to delivering high-impact programming for people navigating these diagnoses, especially at their most critical inflection points.

We are seeking an experienced Executive Director who can lead a lean, focused nonprofit with clarity and operational confidence. The board sets the vision. You execute it.

The Opportunity

This is a unique leadership opportunity for someone who thrives in small, mission-driven organizations and knows how to lead calmly through transition. You’ll work with a board that’s aligned, focused, and ready to support (not micromanage) your leadership.

You won’t be asked to build a vision from scratch. You’ll be asked to take a refocused organization, its best-in-class programming, and scale its impact through disciplined execution.

Core Responsibilities

Organizational Leadership & Operations

• Provide day-to-day management of the organization, ensuring operational continuity and financial oversight.
• Manage a small, distributed team of contractors and vendors (including marketing, administrative, and technology support).
• Operate effectively without a large internal staff and with a bias toward simplicity and sustainability.
• Maintain effective systems and processes in a lean environment.

Program Execution & Stakeholder Engagement

• Provide executive oversight of core programming, including educational content, webinars, online communities, and in-person events, in collaboration with board leadership and external partners.
• Maintain strong relationships with key stakeholders, including pharmaceutical partners, clinicians, patients, and peer orgs.
• Represent the organization publicly and ensure trust across funding and partner networks.
• Fundraising responsibilities will focus on partner stewardship and collaboration with the Board, rather than primary individual solicitation.

Board Collaboration & Strategic Execution

• Collaborate with a committed Board of Directors to implement the organization’s 2026 operating plan.
• Provide regular updates on organizational performance, financial health, and emerging risks.
• Support board-led recruitment and volunteer development initiatives.

Candidate Profile

You’re likely a fit if you:

• Have 5–10+ years of nonprofit leadership experience in lean environments.
• Have experience working with or around patient communities, health advocacy, or rare disease.
• Are comfortable working with outside contractors.
• Have strong operational judgment and can run tight, steady systems without overcomplicating.
• Are a clear communicator who knows how to build trust across diverse stakeholders.
• Are energized by focus and clarity.
• Can work independently while maintaining alignment with a board of directors.

Bonus Points If You Have:

• Experience managing pharma or healthcare relationships
• Worked in or around the sleep, neurology, or chronic illness communities
• Led or stabilized an organization during a leadership transition
• Run in-person conferences or large-scale patient-facing programs

Compensation & Logistics

• Salary: $130,000–$145,000
• Benefits: 401(k), Health Reimbursement Arrangement (HRA covering ~70% of healthcare costs), PTO
• Location: Remote (U.S. based)
• Travel: 3–5 trips per year (including conference)

Narcolepsy Network is an equal opportunity employer.

We strongly encourage candidates from historically excluded or underrepresented backgrounds to apply.

Benefits: 401(k), Health Reimbursement Arrangement (HRA covering ~70% of healthcare costs), PTO