Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
EDUCATION
Information provided for public, academic, medical and others interested in obtaining information about narcolepsy, its causes, symptoms and treatments. Creation and distribution of educational brochures and educational materials, assistance to support groups, maintenance of website, and interactive forum discussions. Average 5,000 web hits per month.
CONFERENCES
Each year NN hosts a conference in a different city, which creates a unique gathering for support, education, awareness building and networking among people affected by narcolepsy. A selection of workshops, lectures, support forums, energizers and creative activities are some of the offerings at the conference. Graduate students and professionals in health, education, science and government can get a unique perspective on narcolepsy and the effect it has on individuals.
NEWSLETTERS
"THE NETWORK" is published quarterly, each 14-16 pages, distributed to approximately 1,000 members, donors, professionals, and others. Some topics included are: research news coping strategies, personal stories, accommodations in education and employment, legal rights and responsibilities, and disability.
MEETINGS
Attend annual professional meetings to raise awareness of the support and assistance Narcolepsy Network provides to patients with narcolepsy, as well as the materials available for education. Exhibit at SLEEP and AAN. Attend twice yearly meetings of the Sleep Disorders Research Advisory Board to stay abreast of current trends in research, treatment, and funding opportunities. Attend three meetings per year of the National Sleep Awareness Round table to plan and participate in narcolepsy awareness campaigns together with other sleep-related non-profit and governmental health agencies.
Where we work
External reviews

Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Narcolepsy Network, Inc.
Board of directorsas of 03/09/2023
Mr. Keith Harper
Niss Ryan
Louise O'Connell
Sharon O'Shaughnessy
Rajeev Sachdeva
Luis Ortiz
Cynthia Zorn
Piper Paul
Carol Arnette
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data