Causes: Health, Specifically Named Diseases, Voluntary Health Associations & Medical Disciplines
Mission: Narcolepsy Network is a national patient support organization founded in 1986.We are a nonprofit organization that relies on member dues and donations to fund our basic programs. Our primary focus is to:
• Educate and inform individuals with narcolepsy about this life-long neurological sleep disorder, available treatments and symptom management so they may be empowered to achieve the highest quality of life possible;
• Provide emotional support and resources to patients, family members, and friends;
• Encourage and assist in the formation of local support groups and other support systems;
• Serve as a resource center for patients, medical providers, educators, employers, and members of the public;
• Advocate for the interests of all persons with narcolepsy;
• Promote early diagnosis, optimal treatment and scientific research;
• Increase public awareness of narcolepsy
Target demographics: people with narcolepsy
Geographic areas served: The United States
Programs: Conference: 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 2014, nn hosted the 29th annual conference in denver, colorado. Nearly 450 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 and nn presented awards to two researchers.
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 nearly 5,000 members continued to bring narcolepsy news and information to people around the world. Fun awareness events continued, including the new york dream big walk, which had more than 145 walkers raise awareness along the hudson river in new york city. The second annual narcolepsy bed race in virginia also reached more than 60,000 in southwest virginia. Narcolepsy network continued outreach to healthcare providers and educators in 2014, including an initiative to educate medical professionals with two posters that were presented at the sleep 2014 meeting, which is attended, by approximately 5,000 sleep professionals.
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 2,000 newsletters are printed quarterly. As part of its mission to provide support to people with narcolepsy, narcolepsy network encourages the formation of support groups. In 2014, that network of groups increased dramatically with 12 new groups starting up in cities across the country. There are now more than 30 active in-person groups in the u. S. Approximately 30 full and partial membership, and 25 conference scholarships were provided to members in need.
Mission: Narcolepsy Network is a national patient support organization founded in 1986.We are a nonprofit organization that relies on member dues and donations to fund our basic programs. Our primary focus is to:
• Educate and inform individuals with narcolepsy about this life-long neurological sleep disorder, available treatments and symptom management so they may be empowered to achieve the highest quality of life possible;
• Provide emotional support and resources to patients, family members, and friends;
• Encourage and assist in the formation of local support groups and other support systems;
• Serve as a resource center for patients, medical providers, educators, employers, and members of the public;
• Advocate for the interests of all persons with narcolepsy;
• Promote early diagnosis, optimal treatment and scientific research;
• Increase public awareness of narcolepsy
Target demographics: people with narcolepsy
Geographic areas served: The United States
Programs: Conference: 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 2014, nn hosted the 29th annual conference in denver, colorado. Nearly 450 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 and nn presented awards to two researchers.
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 nearly 5,000 members continued to bring narcolepsy news and information to people around the world. Fun awareness events continued, including the new york dream big walk, which had more than 145 walkers raise awareness along the hudson river in new york city. The second annual narcolepsy bed race in virginia also reached more than 60,000 in southwest virginia. Narcolepsy network continued outreach to healthcare providers and educators in 2014, including an initiative to educate medical professionals with two posters that were presented at the sleep 2014 meeting, which is attended, by approximately 5,000 sleep professionals.
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 2,000 newsletters are printed quarterly. As part of its mission to provide support to people with narcolepsy, narcolepsy network encourages the formation of support groups. In 2014, that network of groups increased dramatically with 12 new groups starting up in cities across the country. There are now more than 30 active in-person groups in the u. S. Approximately 30 full and partial membership, and 25 conference scholarships were provided to members in need.
Health
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