Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Mission
What Are CRSDs?
*** Join! ***
*** Take the Survey! ***
Find a Doctor
Help Spread Awareness
 
News Items
CSD-N Presents at SLEEP2022
Book On The Patient Experience
CSD-N Rep on NIH SDRAB
New Diagnostic Tool
Daylight Saving Starts in US, CA
Board Member Briefs Congress
NIH Sleep Research Plan
 
Archived News
 
More About Us
Email List
Brochure
Q&A Docs (FAQs)
Basic Fact Sheet
Infographic
 
Merchandise
Start School Later
Amazon to Donate to CSD-N
Recently Added References
Disclaimer
Facebook, LinkedIn, Twitter
Media Kit
Our Email & Office
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 CRDs) 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.

Advanced Sleep Phase Disorder (ASPD), also called Advanced Sleep Phase Syndrome (ASPS), is the opposite. It is characterized by falling asleep very early in the evening, and waking up in the wee hours of early morning, unable to sleep further.

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.



Take Our Survey!

Circadian Sleep Disorders Network has launched its PATIENT POWERED REGISTRY AND SURVEY for people with Circadian Rhythm Sleep Disorders. The registry is open to anyone with a circadian rhythm sleep disorder from any country. You can sign up for the registry and take the survey (it's free) at CircadianSleepDisorders.org/registry.

By collecting information from a large number of people actually suffering from these disorders, we can stimulate research into causes, treatments, and effects of circadian disorders.

We often complain that so little research has been done on people suffering with Circadian Rhythm Sleep Disorders. One reason is the difficulty researchers have in locating people with these disorders. Well, this is your chance! You can make a difference!

The information you provide can jump-start research on some of the questions we've been asking about for years - but only if enough people participate. You can also optionally allow researchers to contact you to participate in studies. Sign up now (free), and please take the survey.

Note that the signup questions that you get first are not the survey! Part of the signup process with Invitae (the registry host, formerly AltaVoice) involves answering two pages of demographic questions like age, gender, race, etc. This is not our survey.

After you've finished signing up you will be taken to our survey, called "Circadian Rhythm Sleep Disorders", which asks about your circadian disorders, sleep habits, treatment, and other disorders. Our survey has multiple pages. The actual number is dependent on how you answer some key questions. Please be sure to complete the entire survey. Otherwise, your responses will not be used in analysis.

For more information, and to review the survey instructions and definitions, click here.

Researchers: You can view the survey questions without taking the survey here. You can request participants to contact you for further research by contacting Invitae PIN (Patient Insights Network) (website) or emailing Circadian Sleep Disorders Network at for further information.

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 doctors and their general doctors 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 U.S. letter paper (8½x11) or on A4 paper (non--U.S.). Booklets can be printed for DSPS or for Non-24 (the same file can be printed on either U.S. or A4 paper). Alternatively you can email us at to request a printed copy of any or all these documents (please specify which, and how many you really need). Be sure to include your name and full postal address. We will send these at no charge to you.

News Items

CSD-N Presents at SLEEP2022

Alexandra Wharton speaking at SLEEP 2022

June, 2022
The 36th annual conference of SLEEP - the world's largest sleep meeting - was held in Charlotte from June 4th to the 8th, 2022. It featured 100 lectures and presentations about the future of sleep medicine and circadian research, sleep health disparities, sleep and cannabis, school start times and daylight saving time.

Representatives from several patient advocacy groups including Circadian Sleep Disorders Network (CSD-N), Restless Leg Syndrome Foundation, American Sleep Apnea Association, Wake Up Narcolepsy, and Hypersomnia Foundation were invited to speak on the panel, Rise of the Patient Voice in Sleep Medicine: The Role of the Patient Advocacy Groups.

Via a video presentation, CSD-N Board Member Alexandra Wharton explained CSD-N's mission to raise awareness of circadian rhythm sleep disorders (CRDs) and to improve the lives of people CRDs.

She also highlighted CSD-N's patient-powered registry and survey, which collected information from a large number of people who suffer from CRDs. We expect to publish some results from the survey shortly. We hope it stimulates additional research into the causes, treatments, and the effects of circadian rhythms. [Webmaster note: some preliminary results are available here.]

Elevating patient voices will enhance care and improve the lives of the 40 to 60 million Americans who face sleep disorders. We are honored to be part of the momentum toward greater patient inclusion in the sleep field.

New Book On The Patient Experience

Sleep Misfits book

May, 2022
Sleep Misfits: the reality of Delayed Sleep Phase Syndrome & Non-24, compiled by Sally Cat, has recently been published. It includes excerpts from the CSD-N website and other sources, as well as lots of quotes from people on the DSPS and Non-24 Facebook groups. It is available here on Amazon.

From the Foreword: "Sleep Misfits is the first book to extensively explore delayed sleep phase syndrome (DSPS) and non-24-hour-sleep-wake disorder (Non-24) through the words of actual experients....There remains massive prejudice and discrimination against those of us whose body clocks prevent us from waking and sleeping at socially-approved hours. The main purpose of this book is to tackle these wide-scale negative assumptions by increasing empathy. Additionally, the book is intended to serve as a manual for people affected, including their families."

We are aware of one instance in the book in which we are misquoted. On pag 24 she says (de-emphasis added):

According to Rare Diseases Database, Non-24 "occurs in 55-70% of completely blind people, but also occurs in an unknown number of sighted people."6 Circadian Sleep Disorders Network suggest the percentage of sighted Non-24ers may be 0.03% (three people in every thousand).7
We actually suggest (in the footnoted reference) that
Non-24 is quite rare. An incidence of 0.03% has been quoted. Non-24 occurs primarily among blind individuals, though some sighted persons have the disorder also.
So the 0.03% in our document refers to all Non-24, not just sighted Non-24. (And, by the way, 0.03% is three in ten thousand, not three in one thousand.)

CSD-N Rep on NIH SDRAB

Alexandra Wharton

Apr 7, 2022
CSD-N Board Member Alexandra Wharton was officially welcomed to the NIH (U.S. National Institutes of Health) Sleep Disorders Research Advisory Board (SDRAB). She represents the circadian sleep disorders patient community. Alex is the social media liaison for CSD-N, and is also a chapter leader for Start School Later.

The SDRAB receives updates on the progress of sleep and circadian research activities across NIH, and the activities of Federal stakeholders and professional societies. The board is responsible for periodic updates to the NIH Sleep Disorders Research Plan, and advises the NIH on next steps.

Potential Diagnostic Tool for DSPD, N24

Prof Zoya Popovic

March 25, 2022
LumenAstra and the Microwave Lab at the University of Colorado Boulder (Prof. Zoya Popovic, right) are developing a small, wearable sensor for measuring internal body temperature. They recognize the need for easier continuous non-invasive core body temperature monitoring.

The team contacted CSD-N President Peter Mansbach to learn more about diagnosing circadian rhythm sleep disorders. This sensor could in principle provide a simpler way of definitively diagnosing DSPD and especially Non-24, using a procedure both less invasive and less demanding than measuring DLMO (Dim Light Melatonin Onset) under "constant routine" conditions (dim light, no exercise, etc).

Daylight Saving Time Starts in US, Canada

The Old Indian

March 13, 2022
The old Indian said, "Only the government would believe you could cut a foot off the top of a blanket, sew it to the bottom, and have a longer blanket."

Board Member Speaks At Congressional Briefing

Alexander Wharton Congressional Briefing

Alexandra Wharton Jan 25, 2022
CSD-N board member Alexandra Wharton was invited to speak at the Congressional briefing on Jan 25 for the (U.S.) NIH Sleep Disorders Research Plan. She gave a wonderful introduction to DSPD for the attendees. The briefing was carried live on Zoom, and was open to the public. You can view her seven minute presentation here. The entire hour-long briefing is available here.

The Sleep Disorders Research Plan was developed by the National Center for Sleep Disorders Research (NCSDR), a center within the U.S. National Institues of Health. The Plan was developed with the help of the Sleep Disorders Research Advisory Board. Thanks to Susan Plawsky, who represented the circadian sleep disorders patient community on that board during the Plan's development.

NIH Sleep Research Plan Released

NIH Sleep Research Plan

Dec 13, 2021
The National Center on Sleep Disorders Research, part of the U.S. National Institutes of Health (NIH), announces the release of the 2021 NIH Sleep Research Plan. This new research plan presents a comprehensive approach to addressing the critical research needs and opportunities in sleep and circadian biology.

The plan was developed with input from the public, scientific communities, the Sleep Disorders Research Advisory Board (SDRAB), the NIH Sleep Research Coordinating Committee, NIH leadership, and partners across the Federal government, with the goal of advancing sleep and circadian research that improves medicine, public health, and the safety of the nation.

Many thanks to Susan Plawsky for ably representing Circadian Sleep Disorders Network on the SDRAB through four years of painstaking work, despite all the bureaucratic wrangling over wording and the compromises required.

Tune in to NIH's LinkedIn Live Event on Thursday, December 16, 2021 beginning at Noon ET to ask questions about the new plan.

Archived News

Archived News 2021
Archived News 2020
Archived News 2019
Archived News 2018
Archived News 2017
Archived News 2016
Archived News 2015
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.

Affiliation

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. But we have no control over what appears or who can join, and list membership is completely separate from membership in CSD-N.

Posting

Once you've signed up for the list, you post by sending an email to 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 (using the password you created when signing up for the email list) at www.circadiandisorders.org/list.

Rules

There are some rules:
The rules that the list software enforces are

One frequent problem is that people with more than one e-mail account try to send from an address that isn't registered as a member here. An infrequent problem is that a few e-mail providers aren't accepted at all so another e-mail account must be (acquired and) used. gmail generally works well.

An additional rule is PLEASE do not just reply to a message with a subject line containing "Niteowl Digest, Vol xxx, Issue xxx". That is obviously not informative and if you aren't careful you may include the whole list of messages in the Digest, making your message too large for the list.

Digest or not, it is a good idea to trim whatever you are replying to leaving just enough for people to know what you are replying to.

Of course, don't be snippy or insulting, and please take off-topic conversations off-list. And no advertising.

Archives

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.

Unsubscribing

To unsubscribe from the Niteowl email list go to
http://lists.circadiandisorders.org/listinfo.cgi/niteowl-circadiandisorders.org
and follow the directions at the bottom of the page. You will need to know your list password.

If you do not know your list password, send email to
niteowl-request@lists.circadiandisorders.org
with PASSWORD in the subject line. This email must come from the same email address that you subscribed from (which is the one your incoming Niteowl list emails go to). Your password will be sent to you at that address.

If that doesn't work, you can unsubscribe by sending email to
niteowl-request@lists.circadiandisorders.org
with UNSUBSCRIBE in the subject line. This email must come from the same email address that you subscribed from (which is the one you your incoming Niteowl list emails go to). If you do this, you will get an email back asking you to confirm. You must follow the instructions and confirm, or you will not be unsubscribed.

Help

For more (or more current) help on list commands, send email to
niteowl-request@lists.circadiandisorders.org
with HELP in the subject line.

Our Brochure

image of brochure cover Our brochure is geared to the general public, to introduce DSPD (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 (FAQs)

We have posted documents describing DSPD (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 DSPD and the other for Non-24:

DSPD 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    
     No-24 Preguntas y Respuestas - web     printer    
German:     DSPS F&A - web     printer    
     Non-24 F&A - web     printer    

Our Basic Fact Sheet

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

Our Infographic

infographic thumbnail Former board member and artist Lily Style has created an infographic describing Circadian Rhythm Sleep Disorders. View it in your browser at www.circadiansleepdisorders.org/docs/CRSDGraphic.php. Feel free to repost the graphic to help raise awareness.

You can print it directly from your browser (we suggest making the browser window full screen - the image will resize). We are also posting JPG images in various proportions for printing directly on different sizes of paper:

You can download these (in Microsoft Windows, right-click and select Save As). To print in Microsoft Windows, right-click on the downloaded file (in File Explorer) and select Print. Or open it in a photo- or image-processing program to use that program's features such as borderless printing.

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 confirm Circadian Sleep Disorders Network as your charity. 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 several contribution checks from Amazon! Please select Circadian Sleep Disorders Network as your charity. smile.amazon.com

Also available on the the Amazon Shopping app on your phone. How it works there:

  1. Open the Amazon app on your phone
  2. Select the main menu (=) & tap on "AmazonSmile" within Programs & Features
  3. Select "Circadian Sleep Disorders Network Inc" as your charity
  4. Follow the on-screen instructions to activate AmazonSmile in the mobile app

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

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.

Disclaimer

This web site is intended to provide generic information about Circadian Rhythm Sleep Disorders, 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.



Contact:  
Email:

Office: 4619 Woodfield Rd, Bethesda, MD 20814
Phone: By appointment only, please.

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© 2022 Circadian Sleep Disorders Network
Last modified Aug 30, 2022
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