Narcolepsy Network
Overview
Narcolepsy Network is a non-profit organization dedicated to supporting individuals with narcolepsy, a chronic sleep disorder characterized by excessive daytime sleepiness and sudden loss of muscle control, known as cataplexy. The organization aims to raise awareness, provide education, and advocate for better treatment and understanding of narcolepsy.
History
Narcolepsy Network was founded in 1986 by a group of individuals affected by narcolepsy who recognized the need for a support system and advocacy group. Since its inception, the organization has grown to include members from across the United States and internationally.
Mission
The mission of Narcolepsy Network is to improve the lives of people with narcolepsy by providing support, education, and advocacy. The organization seeks to increase public awareness about narcolepsy and to promote research into its causes and treatments.
Activities
Narcolepsy Network engages in a variety of activities to fulfill its mission:
Support
The organization offers support groups, both in-person and online, where individuals with narcolepsy and their families can share experiences and advice. They also provide resources and information to help manage the condition.
Education
Narcolepsy Network organizes educational events, including an annual conference, webinars, and workshops, to educate both the public and healthcare professionals about narcolepsy. They also produce educational materials and resources available on their website.
Advocacy
The organization advocates for policies that improve the lives of people with narcolepsy. This includes working with lawmakers to ensure access to necessary treatments and accommodations in educational and workplace settings.
Annual Conference
One of the key events organized by Narcolepsy Network is its annual conference, which brings together individuals with narcolepsy, their families, researchers, and healthcare professionals. The conference features presentations on the latest research, treatment options, and strategies for living with narcolepsy.
Membership
Membership in Narcolepsy Network is open to anyone interested in supporting the organization's mission. Members receive access to exclusive resources, newsletters, and discounts on conference registration.
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Contributors: Prab R. Tumpati, MD