On-line support and information for people with narcolepsy and ideopathic
hypersomnia, their families, their partners and care givers. Static website. (Also called N-List or [N]-List.)
Narcolepsy self-help Group. They have an annual conference and quarterly
newsletters. Coordinate US-Based self-help groups. Pamphletes and information
for narcoleptics and their family. Their web pages are very static. (Also called Narnet.)
A narcolepsy patient to patient mentoring program. Run by TAS and supported by Orphan Medical,
a telelphone contact program providing direct contact with others with narcolepsy.
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 with Narcolepsy,
as well as their families, doctors and friends.
An international newsletter for patients, physicians, and researchers.
Incomplete pages, alternative views on treatments, support
groups, and Sample Newsletters on-line.
An understanding of the pathophysiology of Narcolepsy is considered
by some to be a key factor in advancing knowledge about the role of the
brain in controlling sleep and sleepiness. Nice Website including: FAQ;
Research infomation; Narcoleptics and Partners;
Jumpstation.
The Narcolepsy Research Project consists of a group of clinicians and
investigators dedicated to improving the care of narcoleptic patients.
They are particularly interested in learning more about the treatment
of excessive daytime sleepiness; what treatments are effective and what
treatments are not effective for controlling this symptom.
Minnasota Public Radio's September 1997 coverage of Narcolepsy, some
of the research that Dr. Mignot is doing and some people who have to live
with it. An excellent introduction for the general public to this disorder.
A brief review of a Maryland case where the employeer was found to
be within their rights to discharge an employee with narcolepsy where
efforts to accomodate the condition have proven fruitless.
Lots of information for AOL users! Brian has a growing FAQ. A nice
description how cataplexy feels and a brief discussion about resources
for Narcoleptics. Very "personable" site!
Foundation to encourage communication between researchers for the exchange
of information, biological material, ideas and concepts that will lead
to appropriate research, enabling the finding of the gene responsible
for Narcolepsy and leading ultimately to a cure. Your support of ideas
and research could prove to be of critical importance in this cooperative
pursuit.
The NNR is a confidential database of genetic information provided by
individuals with narcolepsy. It will be used for the sole purpose of promoting
further research in narcolepsy.
The National Organization for Rare Disorders (NORD) is a unique federation
of voluntary health organizations dedicated to helping people with rare
"orphan" diseases and assisting the organizations that serve them. NORD
is committed to the identification, treatment, and cure of rare disorders
through programs of education, advocacy, research, and service. with rare
disorders and disabilities.
Orphan Medical is conducting studies which treat Narcolepsy/Cataplexy
with XyremTM (GHB). To date, this treatement
method is extreamly promising. Orphan describes itself as a company "Dedicated
to Patients with Uncommon Diseases".
The Merck Manual of Diagnosis and Therapy is one of the most
respected resources for medical practioners. The Merck Manual of Medical
Information--Home Edition uses everyday language to present information
about diseases, diagnosis, prevention, and treatment.
The Mining Company outdoes Yahoo with a well presented links and abstracts
for all sleep disorders. A good effort by a commercial firm. (Of
course, not as comprehensive as this list.)
Everything you wanted to know about sleep disorders but were too tired
to ask. Sites are Rated! One of the first places to stop when surfin' for
Sleep Disorder information. Of particular note is their:
Guide to Accredited Sleep Disorders Centers page.
The National Sleep Foundation is a nonprofit organization dedicated to
both the prevention of catastrophic accidents caused by sleep deprivation
and excessive sleepiness and to enhanced quality of life for the millions
of Americans who suffer from sleep disorders.
A great deal of information (or at least pointers to that information)
under one roof. Extensive collection of abstracts, database lookups, and
WWW discussion lists. Some of their links to outside organizations need
a lot of help. Specific entry points:
Night terrors occur during a phase of deep non-REM sleep usually within
an hour after going to bed. Good information on
sleep stages. Comprehensive list of on-line
sleep resources.
Website dedicated to EDS sponsored by Cephalon (makers of Provigil). Provides
information on "what is EDS" and has a nice implmentation of the questionaire
and rating of your sleepiness using the Epworth Sleepiness Scale.
Dr. Thorpy's Sleep Medicine website with an extensive set of links listing
resources regarding all aspects of sleep including, the physiology of sleep,
clinical sleep medicine, sleep research, federal and state information,
patient information, and business-related groups.
Delayed Sleep Phase Syndrome (DSPS) is a chronobiological clock (circadian
rhythm) disorder where the individual naturally has a longer than 24 hour
day. People suffering from DSPS have a hard time going to sleep "on time"
and getting up in the morning.
The Mining Company outdoes Yahoo with comprehensive reviews and commentary
on WWW sites. They have a well thought out site covering most if not all
the sleep disorders. They provide chat services for people with sleep disorders.
The BioMedNet Club for biological and medical scientists is an
online information, communication and shopping service, owned and
operated by BioMedNet Limited, and available through the internet via
the World Wide Web. (NOTE: They require a free membership to
access their pages.)
"Smart Drug News is the leading newsletter on smart
nutrients and cognitive drugs. Published ten times per
year by CERI, it covers the most current information on
how to obtain and how to use nutrients, herbs, and
pharmaceuticals to enhance a myriad of mental functions
that we depend on to be happy, successful, productive,
and fulfilled people."
Description of L-Tyrosine, its possible effects, and
contra-indications. Smart Basics is a reseller of Amino Acids,
Vitamins, and other health products.
Brief description of Choline and pointers to other information
on their site. NOTE: Smart Basics is a reseller of Amino Acids,
Vitamins, and other health products.
Description of the "Amygdala" from the Encyclopedia of Human
Behavior. The short passage from the "Limbic System" chapter by
R. Joseph of Neurobehavioral Center and Palo Alto Veterans Affairs
Medical Center briefly describes many of functions of this section of
our brain. One theory is that Narcolepsy is due to a malfunction of
the Amygdala. Another mentions that Narcolepsy is an autoimmune
problems where the body actually turns on itself and damages the
amygdala
MedWatch News: January, 1997. A recent review of postmarketing
experience with
Cylert disclosed ten reports from the U.S. of acute liver
failure in children,
with additional reports of liver failure in adults and in
children from foreign countries.
Regional ADA Technical Assistance Center. The
Rocky Mountain ADA Technical Assistance Center is
authorized by NIDDR to provide information,
materials, and technical assistance to
individuals and entities that are covered by the
Americans With Disabilities Act (ADA).
Excellent WWW presentation about clinicial depression. Its reflections
and "how does it feel" are good examples of what the WWW medium can
provide for publications on disabilities.
Brief discussion of "Primary Disorder of Vigilance". Vigilance related
problems are common with PWN. Some are misdiagnosed as suffering from
Vigilance related problems (ADD et cetera).
People with affective disorders (bipolar, unipolar, and
schizoaffective disorders) also tend
to have a variety of other ailments and disorders.
Research has shown that these illnesses are related to each other,
pathologically speaking.
In fact, sometimes medications for one illness will help to ease
the symptoms of others.
This WEB site is devoted to helping people and their
caregivers better understand the clinical advances both being studied
in the laboratory and those that are available now to
ameliorate these
conditions. They hope to provide their visitors with 'cutting edge"
developments by inviting leading clinicians, researchers and
therapeutic manufacturers to share their knowledge and, most
importantly, interact.
The World Nap Organization (WNO) is the nap lobby -- an
unabashed special interest group devoted to battling negative images
of the blissful practice of nap taking.
owner-narcolesy@lists.mv.net
Last modified: Monday, October 25, 2004
This document is Copyright 1997-2004 by Dana Groff.
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