Updated August 24, 1999
| Sleep Disorders Support Groups | Sleep Disorders Centers | Sleep Organizations | Professional Sleep Organizations | Related Professional Organizations |State/Regional Societies & Associations | Sleep Education |
- A.P.N.E.A. Net (New site that is under construction, but will provide news, education and awareness from the patients perspective.)
- Phantom Sleep Page (Jerry Halberstadt, author of the book "Phantom of the Night" on sleep apnea, has info on snoring and other sleep problems as well)
- Quietsleep (dental practice dedicated to the recognition and non-invasive treatment of snoring and Obstructive Sleep Apnea)
- The Sleep Home Pages: Bisleep (Provides a comprehensive resource for individuals who are involved in the research or treatment of sleep) -- Can provide in depth information on various topics in sleep, suggested for the "advanced" sleep seeker.
- The Sleep Home Pages (above) has a new E-mail Current Alerting Service called NAPS (New Abstracts and Papers in Sleep) -- when you subscribe to the mailing list (password required), they will send a weekly E-mail Alert of new information. NAPS also has an archive of sleep and sleep-related papers for the current year. It is geared toward sleep professionals, but it can be interesting reading for the "advanced" sleep seeker.
- The Sleep Home Pages BiblioSleep offers BEDS (Bibliographic Electronic Databases of Sleep) - BiblioSleep currently consists of all sleep and sleep-related papers from 1992 to the present. The Bibliographic Electronic Databases of Sleep (BEDS) now includes the five following databases: BiblioSleep, 10th, 11th and 12th Annual APSS
Meeting Abstracts, and New Abstracts and Papers inSleep (NAPS) Current Week and Archives.
- Sleep Medicine Home Page (Lists resources regarding all aspects of sleep)
- SleepNet (All you wanted to know about sleep but were too tired to ask) -- The Sandman continues to add new and exciting things such as The SnoozePaper and ratings of various sleep sites and informational tidbits. The newest feature is the Sleep Forum where you can post questions and comments and communicate with others who have sleep disorders.
- Thrive Online has message boards and a chat on sleep disorders. Search their site for sleep-related articles.
- Tom's Sleeper Page (Home Page of Tom Pace, RPSGT, includes the Sleepscape Bulletin Board for Visitors & Users, links to sleep medicine and research, and much more)
- Sleep, Dreams and Wakefulness (Michel Jouvet's page that include dozens of complete articles describing the mechanisms of sleep and dreams. In English and French)
- Parents Against Tired Truckers (PATT) (P.A.T.T. is a grassroots, not for profit, charitable organization dedicated to heightening public awareness concerning Commercial Motor Carrier and Highway Safety issues; to work with legislatures for fair and effective regulations and enforceable laws, and provide support and assistance to victims and families of Motor Carrier crashes.)
- The Better Sleep Council (If getting a good night's sleep is your dream, you've come to the right place. From keeping regular hours to choosing the right mattress, this site will show you how you can improve the quality of your sleep -- and the quality of your life. Browse around this easy-to-navigate site and discover interesting sleep advice, quiz yourself to see how much you really know about sleep, take a survey and compare your results to others on the Internet, and increase the level of your bed-u-cation.)
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Support Groups are very important in your recovery and treatment plan. Individuals can learn valuable information about their disorder and exchange tips with others who have the same disorder. It is comforting to know you aren't "the only one" who has suffered and now must accept
Individuals who attend support groups are more likely to follow their doctor's treatment plan. The groups often times include family members. Family members need to learn about your disorder and learn how they can support you. Support Groups can provide education, acceptance and compliance.
Is your support group online? Please let us know so we can include you in the list! Send the URL/address to: Nodmaster
Narcolepsy Support Groups
- Narcolepsy Network -- A national information and support network for people with narcolepsy.
- Young Americans With Narcolepsy (Y.A.W.N.) - A youth outreach and development organization designe to mediate effective patient advocacy; youth outreach and social support.
- Florida Narcolepsy Association -- The Florida Narcolepsy Association is a collective of people that "helps" or "comforts" others. This is the idea behind the Florida Narcolepsy Association -- to be there -- to lend a hand toward those afflicted, as well as their families, doctors and friends.
- There is a new discussion group on narcolepsy. It is for people who experience excessive daytime sleepiness, cataplexy, hypnagogic hallucinations and other symptoms of narcolespy. (9/21/98)
Restless Legs Syndrome Support Groups
Sleep Apnea Support Groups -- A.W.A.K.E. (Alert, Well and Keeping Energetic)
The American Sleep Apnea Association (ASAA) is an organization for those who have sleep apnea.
The ASAA A.W.A.K.E. Network plays a crucial role in the ASAA's educational and advocacy efforts. "A.W.A.K.E." is an acronym for "Alert, Well, And Keeping Energetic," characteristics that are uncommon in persons with untreated apnea. Founded in 1988 as a mutual-help support group for persons affected by sleep apnea, the ASAA A.W.A.K.E. Network is now composed of more than 200
groups in 45 states. A.W.A.K.E. meetings are held regularly and guest speakers are often invited to address the group. Topics may include advice on complying with CPAP therapy, legal issues affecting those with sleep apnea, weight loss, treatment options such as oral appliances, and new research findings.
If you are interested in finding a group in your area or starting a group in your area, contact the ASAA. Listed below are some A.W.A.K.E. groups that are online.
- Johns Hopkins A.W.A.K.E. Group -- Our support group serves the Baltimore, Maryland region.
- New York A.W.A.K.E.-- A.W.A.K.E. NY is a support group made up of individuals who have been diagnosed with sleep apnea as well as friends or relatives of those with sleep apnea. Our charter is to educate and inform.
- Sequoia Sleep Disorders Center A.W.A.K.E. Group - Redwood City, California
- Summit A.W.A.K.E., Summit Medical Center, Oakland, California -- A.W.A.K.E. (Alert, Well and Keeping Energetic) is a free support group sponsored by California Center for Sleep Disorders for persons who use a nasal CPAP (Continuous Positive Airway Pressure) for obstructive sleep apnea.
- Western Pennsylvania A.W.A.K.E. -- A health awareness group for people diagnosed with sleep apnea.
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| American Sleep Disorders Association | Association of Polysomnographic Technologists | National Center for Sleep Disorders Research/National Heart Lung & Blood Institute | National Foundation for Sleep Related Disorders in Children | Sleep Medicine Research Foundation | National Sleep Foundation |
NATIONAL SLEEP FOUNDATION (NSF)
Reid Blank, Associate Director
729 Fifteenth Street NW, Fourth Floor
Washington, DC 20005
Fax: (202) 785-2880
Internet Address: http://www.sleepfoundation.org/
AMERICAN SLEEP DISORDERS ASSOCIATION (ASDA)
Jerome A. Barrett, Executive Director
6301 Bandel Road
Rochester, MN 55901
Switchboard: (507) 287-6006
Fax: (507) 287-6008
Newsletter: ASDA Update and ASDA News (For members only)
Internet address: http://www.asda.org/ -- URL/Address change as of 5/23/97.
For information on Government Affairs ask for Jerry Barrett.
NATIONAL CENTER ON SLEEP DISORDERS RESEARCH (NCSDR)
James P. Kiley, Ph.D., Director
Two Rockledge Centre Ste. 7024
6701 Rockledge Drive MSC 7920
Bethesda, MD 20892-7920
Tel: (301) 435-0199
Fax: (301) 480-3451
Internet address: http://www.nhlbi.nih.gov/nhlbi/nhlbi.htm
NOTE: The NCSDR is part of NHLBI.
National Heart, Lung and Blood Institute (NHLBI) Information Center: (301) 251-1222
What they offer:
The NHBLI Information Center has a telephone information service to answer questions about high blood pressure, cholesterol, smoking, asthma, heart attacks, heart disease, obesity, blood resources, sleep apnea and insomnia. They have a database with more than 16,000 materials; a library and reading room open to the general public; and regular program updates.
Call the NHBLI Information Center to receive these sleep disorders publications:
- Facts about Sleep Apnea
- Facts about Insomnia
- Sleep Apnea: Is Your Patient at Risk (excellent publication to give to your primary care physician.)
To keep up with the latest info on heart disease and/or asthma, ask for a free subscription to HeartMemo/AsthmaMemo. By signing up to receive HeartMemo/AsthmaMemo, you will automatically receive other announcements about NHBLI's health education materials and products.
To receive HeartMemo and/or AsthmaMemo, and to be placed on their mailing list, request the form for the publications. Send completed form to:
NHBLI Information Center
P. O. Box 30105
Bethesda, MD 20824-0105
ATTN: Mailing List Registration
ASSOCIATION OF POLYSOMNOGRAPHIC TECHNOLOGISTS (APT)
Julie Sutter, Executive Director
Tamara Carter, Administrative Assistant
Tel: (913) 495-4475
P. O. Box 14861
Lenexa, KS 66285-4861
Tel: (913) 541-1991
Fax: (913) 541-0156
Internet address: http://www.aptweb.org/index.htm
NATIONAL FOUNDATION FOR SLEEP AND RELATED DISORDERS IN CHILDREN (NFSRDC)
Mary Kay Jenkner, Executive Director
4200 W. Peterson
Chicago, IL 60646
Tel: (708) 971-1086
Fax: (312) 434-5311
SLEEP MEDICINE RESEARCH FOUNDATION, INC.
4975 Bradenton Avenue
Dublin, Ohio 43017
Contact Person: Karen McCloskey
Tel: (614) 792-7632
Fax: (614) 766-2599
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The sleep societies and associations membership is generally for professionals in Sleep Medicine. However, one of their focuses/missions is community outreach to inform the public about sleep disorders. If you are not a professional, these organizations can probably give you some information and/or be involved in combined community outreach.
Is your Sleep Society or Sleep Association online? Even if it is not online and you have information to send about its location, address, phone numbers, goals and purpose then please let us know so we can include you! Send the URL, information and address to: Nodmaster
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SCHOOLS OF SLEEP MEDICINE
Please note: If you see a mistake, or wrong information, please E-mail: Nodmaster. We welcome your comments, suggestions, or notification of sleep related information.
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