Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Top
Mission
What Are CRSDs?
*** Join! ***
Help Spread Awareness
News Items
DSPS Q&A in Spanish
Sleep Awareness Week
Rare Disease Day
Atlantic Article on DSPS
Board Elections
AASM Adds CSDs
Hetlioz Update
Social Security Disability (US)
Write NIH To Add DSPD, N24
Archived News
More About Us
Email List
Brochure
Q&A Docs
Basic Fact Sheet
Merchandise
Start School Later
Amazon to Donate to CSD-N
Websites Link to CSD-N
Recently Added References
  (members only)
Disclaimer
Facebook, LinkedIn, Twitter
Media Kit
GuideStar
Our Email Address
The shortcut csd-n.org also gets you to this page, with less typing! But don't forget the hyphen!

Our Mission

Circadian Sleep Disorders Network is an independent nonprofit organization dedicated to improving the lives of people with chronic circadian rhythm disorders.

We aim to increase awareness within the medical community and among the general public, to provide emotional support and practical ideas for people living with these disorders, to inform patients and health care providers about treatment options, to encourage research into circadian rhythms, and to advocate for accommodations in education and employment for people with circadian rhythm sleep disorders.

Note that Circadian Sleep Disorders Network is not affiliated with any pharmaceutical, medical device, or other company.

What Are Circadian Rhythm Sleep Disorders?

Circadian Rhythm Sleep Disorders (CRSDs or CSDs) are neurological disorders in which the sleep-wake cycle is out of sync with the day-night cycle. These include in particular Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder. Also included are Advanced Sleep Phase Disorder, Irregular Sleep Wake Disorder, and Shift Work Disorder, which are defined here.

Delayed Sleep Phase Disorder (DSPD), also called Delayed Sleep Phase Syndrome (DSPS), is characterized by an inability to fall asleep until very late at night, with the resulting need to sleep late in the morning or into the afternoon. Questions? See our DSPS Q&A.

Non-24-Hour Sleep-Wake Disorder (Non-24), also called Free-Running Disorder (FRD), is a condition in which a person's day length is significantly longer than 24 hours, so that sleep times get later each day, cycling around the clock in a matter of days or weeks. Questions? See our Non-24 Q&A.

Some people use the term reverse sleep, referring to the fact that sometimes people with DSPD and Non-24 end up sleeping during daylight and being awake at night.

Please refer to our descriptions, definitions, and treatments pages for more details, and print out our brochure, fact sheet, and/or Q&A documents to give to others.

Become a Member! or Renew Now!

We can progress toward our mission of promoting awareness and accommodation only if we can demonstrate that we represent a community of people who suffer from these disorders. Please join now, so we can better help you and the CSD community in achieving our common goals. Together we have a voice! More details are on the Join page.

Last year's members: if you haven't renewed yet, please do so now. Renew now!

We are a 501(c)(3) organization based in the U.S., serving the global circadian sleep disorders community. We are a patient organization, entirely supported by member dues and contributions. We are all unpaid volunteers.

Help Us Spread Awareness

image of brochure cover We are asking our members and followers to give our brochure, and/or our Q&A booklets, to their sleep doctor and their general doctor on their next visits. It is vital to all of us suffering from circadian disorders that more doctors and their support staff understand these disorders and how disruptive they can be. The more doctors who know about us, the more patients we can reach, inform, and support. And the larger our membership, the more credible our voice on behalf of all people with circadian sleep disorders.

You can print out the brochure on US letter paper (8½x11) or on A4 paper (non--US). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either US or A4 paper). Alternatively you can email us at to request a printed copy of any or all these documents (please specify which). Be sure to include your name and full postal address. We will send these at no charge to you.

News Items

DSPS Q&A in Spanish

Our DSPS Question and Answer document is now available in Spanish, too. Thanks to member Maggie G for doing the translation!

A translation of the Non-24 Q&A is in progress.

If any of you has the linguistic expertise to translate our documents or web pages into Spanish or any other language, please do so. It can help raise awareness in non-English-speaking countries, and provide material for people with circadian rhythm sleep disorders to pass on to their doctors, family, and employers. Send submissions to .

Sleep Awareness Week

Sleep Awareness Week logo March 2-8 is Sleep Awareness Week, promoted by the National Sleep Foundation (U.S.). "Sleep Awareness Week is an annual public education and awareness campaign to promote the importance of sleep. The week begins with the announcement of the National Sleep Foundation's Sleep in America poll results and ends with the clock change to Daylight Saving Time, where Americans lose one hour of sleep. "

Rare Disease Day 2015

Rare Disease Day logo Circadian Sleep Disorders Network joins in supporting Rare Disease Day on Feb 28, 2015. Rare Disease Day is promoted by EURORDIS (Rare Diseases Europe), NORD (National Organization for Rare Diseases, U.S.), and numerous similar organizations around the world to build awareness of rare diseases. While each rare disease affects relatively few people, there are some 7,000 rare diseases, affecting some 10% of the population in total (NORD).

Non-24-Hour Sleep-Wake Disorder is a rare disease. It has estimated to affect about 90,000 Americans, mostly blind people. Advanced Sleep Phase Disorder (ASPS) is also believed to be rare. Delayed Sleep Phase Disorder is not rare enough to meet the NORD criterion of less than 200,000 people in the U.S. affected: tt has been estimated that half a million U.S. Americans are affected by DSPD.

Atlantic Article on DSPS

An article on DSPS appeared in the January 2015 in The Atlantic. Thanks to Maggie for agreeing to be interviewed, and for her engaging description. Our president, Peter Mansbach, was also interviewed and appears in the article. Thanks to other members who were also interviewed but whose names are not mentioned. And many thanks to the journalist, Ilana E Strauss, for pursuing the information and talking to a wide range of people and writing up the results.

Elections for the Board of Directors

Elections for the Board of Directors of Circadian Sleep Disorders Network have concluded (Dec 2014). Two current board members, James Fadden and Andrew Wall, were re-elected. Two new board members, Kasha Oelke and Jennifer Silvia, have also been elected. All are for two-year terms. Welcome to the new members!

AASM Adds Circadian Rhythm Sleep Disorders to Website

AASM logo In September Circadian Sleep Disorders Network contacted the AASM (American Academy of Sleep Medicine) urging them to add Circadian Rhythm Sleep Disorders to their Sleep Education website. They replied that they were updating their website, and would consider our request. They have now added several pages on Circadian Rhythm Sleep-Wake Disorders.

This is important for us in our mission to raise awareness of CRSDs. The AASM is the pre-eminent sleep organization in the U.S., and is charged with accreditation of sleep labs. They also publish important review articles for sleep doctors, for example Circadian Rhythm Sleep Disorders: Part II, Advanced Sleep Phase Disorder, Delayed Sleep Phase Disorder, Free-Running Disorder, and Irregular Sleep-Wake Rhythm (2007). So this addition certainly helps our credibility. Thank you, AASM.

Hetlioz Update

The FDA has updated its press release regarding its approval of Hetlioz (tasimelteon) by removing the "blind" qualification. It's now approved for non-24 in general. That should make it easier when dealing with insurance.

Previously posted: On January 31, 2014, the FDA approved Hetlioz (tasimelteon) for treatment of non-24 in the blind: www.hetlioz.com (Vanda Pharmaceuticals). It is now available in the U.S. by prescription. We assume it can be used off-label for sighted non-24 people, and possibly even for DSPS. It is supposed to work similarly to melatonin.

For those interested, the (very long) transcript of the FDA meeting approving Hetlioz is available at http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/PeripheralandCentralNervousSystemDrugsAdvisoryCommittee/UCM386061.pdf.

Note: Circadian Sleep Disorders Network is not in any way affiliated with Vanda Pharmaceuticals, maker of Hetlioz.

Social Security Disability Claims Process (U.S.)

To assist members of the public to better understand the U.S. Social Security Disability process, the Social Security Administration has created a helpful YouTube video series at https://www.youtube.com/playlist?list=PLGSYaZN04xzFCoEqDlY3n7xgWLh55vvDh

Write NIH To Add CRSDs To Their Website

NIH has not included DSPD or Non-24 on their website!

The U.S. National Institutes of Health (NIH) has a number of web pages which talk about sleep disorders. In all these pages we see sleep apnea, narcolepsy, and restless legs; but we do not see any Circadian Rhythm Sleep Disorders - no Delayed Sleep Phase Disorder, no Non-24-Hour Sleep-Wake Disorder. It's no wonder people haven't heard of these disorders, and many doctors still don't recognize how serious they are....

Instructions and sample email are at www.circadiansleepdisorders.org/docs/campaigns/NIHWeb.php . Send email to twerym@nhlbi.nih.gov, and please copy CSD-N at csd-n-news@csd-n.org, so we can follow up, possibly including contacting higher ups.


I received this email from the NIH NHLBI Health Information Center in response to the above campaign. It represents good progress. Dr Twery took action in response to our emails by raising the issue with the Information Center. He passed the emails on to them, and they are aware of our issues. He did advise me that it's a slow process, and will take a long time. In my opinion, it would still help if more people wrote to him, since we are competing for very limited funds. Together we have a voice! Thank you.

Archived News

Archived News 2014
Archived News 2013
Archived News 2011 - 2012 (incomplete)

More About Us

Niteowl Email List

This is a free mailing list support group for people with DSPS and Non-24 to share their experiences. It's a good place for people just discovering these disorders to hear how others deal with them, as well as for long-time participants to get support and to provide support to others. There are often discussions of evolving treatment, useful to all. For further information, and to sign up, go to www.circadiandisorders.org/list.

Note that membership in Circadian Sleep Disorders Network and membership on this email list are completely separate.

Once you've signed up for the list, you post by sending an email to niteowl@circadiandisorders.org. Everyone on the mailing list receives that post as an email, and you receive everyone else's posts as emails. If you don't like to get separate emails, you can opt to receive in digest form, typically one email a day containing all the day's posts. You make that selection (after signing up) by logging in at www.circadiandisorders.org/list.

Once you've signed up for the list, you can also browse previous posts in the archive at
lists.circadiandisorders.org/private.cgi/niteowl-circadiandisorders.org/.

There is also a mirror of the archive on Yahoo at https://groups.yahoo.com/neo/groups/nite-owl/info. This is useful when the primary archives are not working, as sometimes happens. Login to your Yahoo account, or create one (free) - link is at the top right on that page. Then you have to Join the Yahoo copy of the list - this is separate from signing up for the list itself - there is a button on the Yahoo page to do this.

Circadian Sleep Disorders Network is affiliated with this email list, and our volunteers assist the list administrator with some chores. CSD-N was formed by participants on this list, and many of our members post regularly.

Our Brochure

image of brochure cover Our brochure is geared to the general public, to introduce DSPS and Non-24 to people experiencing symptoms of these disorders, and to their families. Please distribute it to anyone who may be interested. Print on lightly colored paper for some color, if you like. We used ivory.

Brochure - web display     Print on US letter size paper, PDF
Print on A4 size paper, PDF

The web display version shows the brochure panels in easy-to-read order. The print versions are meant to be printed out on both sides of a sheet of paper, then folded in thirds, creating a brochure. (In the print version, the panels will appear out of order on-screen.)

Our Q&A Documents

We have posted documents describing DSPS and Non-24, in an easy to read Question-and-Answer format. These are designed to give to family members, friends, employers, and school personnel, to help them understand these disorders. Feel free to print and distribute these. There are two different (but similar) versions, one for DSPS and the other for Non-24:

DSPS Q&A - web     printer     booklet*
Non-24 Q&A - web     printer booklet*

The web formats display nicely in your browser. The printer versions are formatted by your browser for printing a multi-page document. The booklet forms are pre-formatted PDF files that you can print on two sides of a single sheet of paper, which then folds in half into a booklet.
* When printing the booklet, be sure to flip on the short edge (select this option if you have a double-sided printer).

In Other Languages:

Spanish:     DSPS Preguntas y Respuestas - web     printer    
German:     DSPS F&A - web     printer    

Our Basic Fact Sheet

We also have a one page Basic Fact Sheet that introduces DSPS and Non-24 to people who don't know about them. It's a quick and easy read, just the basics.

CSD-N Merchandise

CSD-N mug We are offering merchandise (mugs, T-shirts, tote bags, bumper stickers, and a messenger bag) with our name and logo through CafePress, at
www.cafepress.com/circadiansleepdisordersnetwork. (Note: if you just search CafePress you will find this merchandise, but at a higher price!)

Start School Later

Circadian Sleep Disorders Network is a Coalition Partner of Start School Later. We understand only too well the difficulties many teens have with early school start time, and we support the move to start school later.

Amazon Will Donate Part of Your Purchase to CSD-N

Circadian Sleep Disorders Network
The first time you go to smile.amazon.com you will be asked to select a charity. Please enter Circadian Sleep Disorders Network. Amazon will remember your selection. But you do have to go to smile.amazon.com instead of simply amazon.com, for each purchase, if you want 0.5% of that purchase to go to CSD-N. Note that you pay the same amount either way - through Smile the 0.5% goes to us, otherwise it goes to Amazon.

We have already received our first contribution check from Amazon! Please select Circadian Sleep Disorders Network as your charity. smile.amazon.com

Amazon and the Amazon logo and AmazonSmile and the AmazonSmile logo are trademarks of Amazon.com, Inc. or its affiliates.

Websites Link to CSD-N

We have asked other sleep- and health-related web sites to add a link to the CSD-N website, so interested people could learn more about circadian sleep disorders. That also helps our search ranking, making it easier for others to find us. Sites which have linked to us include:

In addition, circadiandisorders.org, which was no longer being maintained, now forwards their traffic to us.

You can help: email other websites with a request to link to Circadian Sleep Disorders Network at www.circadiansleepdisorders.org. Please use this primary address when suggesting links, not the shortcut.

Recently Added References

This is a list of refences added to our Info page since the last newsletter. The newsletter lists references added since the previous newsletter. These are generally available to members only.

More to come!

We're still getting started!

Disclaimer

This web site is intended to provide generic information about CSDs, and is not intended to replace discussions with a healthcare provider. You should not use the information on this website for diagnosing or treating a medical or health condition. All decisions regarding patient care should be made with your healthcare provider.


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© 2015 Circadian Sleep Disorders Network
Last modified Mar 13, 2015
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