NARCOLEPSY NETWORK INC
PO Box 2178, Lynnwood, WA 98036 www.narcolepsynetwork.org

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Organizations Filed Purposes: The purposes for which the corporation is organized are: educate the public about narcolepsy, support individuals with narcolepsy, promote efficient diagnosis, encourage and promote scientific research for cause, treatments, prevention and cure of narcolepsy, provide for the formation of Chapters, provide funding through solicitation and fund-raising activities for the above-mentioned purposes.

Narcolepsy Network is dedicated to improving the lives of people with narcolepsy. Goals include: increasing public awareness, advocating and providing education and resources for people with narcolepsy, promoting and supporting narcolepsy and related research.

CONFERENCES: Each year Narcolepsy Network (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 and families. In 2019, NN hosted the annual conference in Albuquerque, NM. Almost 350 people with narcolepsy and their supporters attended from all over the world. The conference offered special programming for children and young adults with narcolepsy as well as sessions on research treatment and advocacy. The annual membership meeting was held at the conference. NN also began hosting One Day Seminars in various cities around the country similar to the Annual Conference but on a smaller scale. The first seminar was held in New York, NY with 80 people in attendance.

PUBLIC INFORMATION: Information provided for public, academic, medical, and other persons interested in obtaining information about narcolepsy, its causes, symptoms and treatments. Creation and distribution of educational materials and brochures, maintenance of website, interactive forum discussion and social media outreach. NN's Facebook and Twitter pages, with more than 6,000 followers, and an active Facebook support group with more than 10,000 members continued to bring narcolepsy news and information to people around the world. Fun awareness events continued, including Suddenly Sleepy Saturday, and participation in Rare Disease Week & World Narcolepsy Day. The Youth Ambassador program continued with more youth trained and increasing awareness with presentations for teachers, school nurses and other community members.

NEWSLETTER, MEMBERSHIP & SCHOLARSHIPS: Our quarterly newsletter, "The Network" is for many people the only source of information about narcolepsy. The newsletter is distributed to the membership as well as many non-member sleep centers and professionals. Each newsletter provides information on diagnosis, effective treatments, resources, updates detailing new narcolepsy research, ideas for coping, personal stories and interviews, industry news, legal and insurance guidance and much more. Approximately 600 newsletters are printed quarterly. Beginning in 2019, NN began distributing a weekly e-News report to both members and non-members. As part of its mission to provide support to people with narcolepsy, Narcolepsy Network encourages the formation of support groups. There are more than 30 active in-person groups in the U.S. 22 conference scholarships were provided to members in need.

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Data for this page was sourced from XML published by IRS (public 990 form dataset) from: https://s3.amazonaws.com/irs-form-990/202031129349300733_public.xml