Note that Circadian Sleep Disorders Network is not affiliated with any pharmaceutical, medical device, or other company.
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.
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.
The CSD-N board of directors has voted to add our name to the list of organizations supporting a PSI initiative:
PSI (Patient Services Inc) is a national non-profit patient assistance organization that utilizes donations to subsidize the cost of health insurance premiums as well as copayments and coinsurance. Insurance Providers in several marketplaces are now prohibiting the acceptance of third party premium payments. PSI is working to introduce legislation that would require Federal and State Marketplace plans to accept third party assistance from nonprofit organizations, so that patients with expensive rare and chronic conditions will not have interruptions in their treatments and be left to again fend for themselves. PSI is working in coalition with many groups to achieve this. More details are in this document.
On Apr 22 our president, Peter Mansbach, attended a Congressional Reception at the Rayburn House Office Building (Washington, DC) in support of this effort. Two congressmen spoke: Rep David Jolly (R-FL) and Rep Leonard Lance (R-NJ). Both are in favor of helping people with rare diseases get increased access to the care they need. Rep Jolly is speaking in the photo.
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 .
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. "
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.
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 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!
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.
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.
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
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 firstname.lastname@example.org, and please copy CSD-N at email@example.com, 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 2014
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 firstname.lastname@example.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
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 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.)
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).
|Spanish:||DSPS Preguntas y Respuestas - web||printer|
|German:||DSPS F&A - web||printer|
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.
We are offering merchandise (mugs, T-shirts, tote bags, bumper stickers, and a messenger bag) with our name and logo through CafePress,
www.cafepress.com/circadiansleepdisordersnetwork. (Note: if you just search CafePress you will find this merchandise, but at a higher price!)
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.
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.
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:
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.
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.
We're still getting started!
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.