Sleep Disorder Support Groups
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 treatment.
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.
Narcolepsy Support Groups
- Narcolepsy Network -- A national information and support network for people with narcolepsy.
- 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.
Restless Legs Syndrome Support Groups
- Restless Legs Syndrome Foundation Support Page -- Provides addresses, e-mail and phone numbers of support groups in the US and Canada.
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.
Avilys, LLC assumes no responsibility for the content of the sites listed below as they can change without notice.
- A.P.N.E.A. Net
- 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.
- 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.
- 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.)
- The Sleep Well
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)
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/health/public/sleep/index.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
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