Narcolepsy Network

Name

Narcolepsy Network

Legal name

Narcolepsy Network, Inc.

Website

https://narcolepsynetwork.org

Company type

Private

Founded year

1986

Operating status

Operating

Headcount range

11–50 employees

Ownership category

akta.pro rank

Headquarters

HQ city

Lynnwood

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D

Revenue model

1. Membership Dues: Annual membership dues of $21 per individual provide revenue and community access. Members receive access to patient trials/studies, conference scholarships, discounted conference registration, newsletter, educational materials, voting rights, and volunteer leadership opportunities.
2. Donations and Contributions: Tax-deductible donations through online portal, mail-in forms, vehicle donations, appreciated stock donations, planned giving (bequests, endowments, charitable remainder trusts), and workplace giving through United Way and Combined Federal Campaign (code 12093).
3. Annual Conference Registration: Revenue generated through 2.5-day Annual Conference registration fees for people with narcolepsy, IH, and their supporters. Conference includes support groups, educational sessions, and latest research updates.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels8 records

Core offering

Narcolepsy Network is a national 501(c)(3) nonprofit organization that delivers patient advocacy, education, and community support services for people living with narcolepsy and idiopathic hypersomnia. Its core offerings include a membership program, weekly virtual support groups, an annual multi-day conference, clinical research participation programs (including brain donation), educational materials and webinars, and public awareness campaigns such as Suddenly Sleepy Saturday.

Product overview

Narcolepsy Network is a national non-profit organization serving people with narcolepsy and idiopathic hypersomnia. The organization does not offer a unified software product but rather delivers a portfolio of community programs and services including: membership program, annual conference, virtual support groups, clinical research participation opportunities, The Listening Project, Suddenly Sleepy Saturday awareness campaign, educational materials and webinars, college success resources, sleep center directory, blog content, and community advocacy programs. These programs work together to provide support, education, advocacy, and community connection for those affected by sleep disorders.

Differentiator

Problem solved

Functional benefit

Products and services

• Annual Conference A 2.5-day annual in-person conference for people with narcolepsy, idiopathic hypersomnia, and their supporters, offering support groups, latest research presentations, treatment development updates, and networking opportunities.
• Virtual Support Groups Weekly virtual support groups for People with Narcolepsy, People with Idiopathic Hypersomnia, parents, and supporters, with local in-person and virtual meeting listings.
• Membership Program Annual membership program ($21/year) providing access to patient trials/studies, conference scholarships and discounts, member newsletter, educational materials, voting rights, and volunteer opportunities. A separate track exists for Professional & Sleep Center members.
• Clinical Research Participation Programs enabling members to participate in clinical trials and post-mortem brain tissue donation research, operated in partnership with the National Brain Bank for Narcolepsy Research (UCLA/VA West LA) and the NIH NeuroBioBank.
• The Listening Project Initiative launched August 4, 2025 to capture the diverse experiences of people living with narcolepsy and idiopathic hypersomnia through listening sessions and community engagement.
• Suddenly Sleepy Saturday Annual public awareness campaign held the Saturday before Daylight Savings Time begins, including proclamation requests to state and municipal governments, media engagement kits, social media resources, and community events.

Quantifiable outcome

• SLEEP 2026 conference engagement: 5,000+ attendees, 100+ exhibitors, constructive meetings with pharmaceutical partners and patient advocacy organizations
• +2 more outcomes

Named customers3 records

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Integration6 records

Partnerships

Three partnerships are on record, tiered core and minor.

• Pharmaceutical Companies (SLEEP 2026 Partners)coreStrategic or Co-development Partner · 1 June 2026Narcolepsy Network holds constructive meetings with pharmaceutical partners at SLEEP conference. As of 2026, the organization is engaged with pharmaceutical companies developing orexin agonists and other narcolepsy treatments, representing patient perspectives in drug development discussions.
• National Brain Bank for Narcolepsy Research (UCLA/VA West LA)coreStrategic or Co-development PartnerPartnership with UCLA and VA West Los Angeles Healthcare Center for brain tissue donation program. Advisory committee of international narcolepsy experts evaluates requests and distributes tissue for research likely to advance narcolepsy treatment.
• NIH NeuroBioBankminorStrategic or Co-development PartnerPartnership with NIH's NeuroBioBank established in 2013 to investigate nervous system conditions using human post-mortem brain tissue for narcolepsy research.

Scale indicators4 records

Recent moves6 records

Expansion highlights5 records

Emerging players

• Myasthenia Gravis Foundation of America: National nonprofit for another rare chronic neurological condition with similar community-led advocacy model. Comparable scale, structure, and patient population characteristics.

Direct peers

• Wake Up Narcolepsy: A national narcolepsy-focused nonprofit that funds research, raises awareness, and provides community support. Direct peer serving the same patient population with overlapping mission areas.
• Hypersomnia Foundation: Nonprofit dedicated to idiopathic hypersomnia and related sleep disorders, providing education, research support, and patient advocacy. Direct overlap on IH and adjacent narcolepsy mission.
• Project Sleep: Sleep disorder advocacy nonprofit focused on sleep health awareness, patient storytelling, and education. Comparable community-driven advocacy model serving sleep disorder populations.

Broad incumbents

• Restless Legs Syndrome Foundation: Long-standing nonprofit serving patients with restless legs syndrome through education, research funding, and support groups. Comparable patient advocacy structure in the sleep disorder space.
• American Sleep Apnea Association: National patient-focused nonprofit for sleep apnea, offering education, support, and advocacy. Similar operating model and broader sleep disorder footprint than Narcolepsy Network.
• National Sleep Foundation: Major US sleep health nonprofit with broad public awareness, education, and advocacy mandate. Comparable advocacy role but at a significantly larger scale and broader sleep health remit.
• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for rare diseases including narcolepsy. Provides policy advocacy, research grants, and patient resources with much broader scope than a single-disease nonprofit.

Others

• American Academy of Sleep Medicine: Professional society for sleep medicine clinicians and researchers. Comparable stakeholder in the narcolepsy/IH ecosystem, but representing providers rather than patients.
• Sleep Research Society: Scientific society promoting sleep and circadian research. Overlapping research and conference ecosystem (e.g., SLEEP 2026) but academic/researcher-focused rather than patient-focused.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/NarcolepsyNtwrk
• YouTubeyoutube.com/user/NarcolepsyNetwork
• Facebookfacebook.com/NarcolepsyNetwork
• Instagraminstagram.com/narcolepsynetwork

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Narcolepsy Network