Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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ON THIS PAGE (links):
Top
Mission
What Are CRSDs?
*** Join! ***
Help Spread Awareness
News Items
CSD-N Starting Patient Registry
Accommodations for DSPS
Non-24 Q&A in German
Circadian Rep Attends SDRAB
Infographic on CRSDs
WebMD on Non-24
3-Minute Videos on CRSDs
Can Chronotherapy Cause Non-24?
CSD-N Maintains List of Doctors
Write NIH To Add DSPD, N24
Archived News
More About Us
Email List
Brochure
Q&A Docs (FAQs)
Basic Fact Sheet
Infographic
Find a Doctor
 
Merchandise
Start School Later
Amazon to Donate to CSD-N
Welzoo to Donate to CSD-N
Websites Link to CSD-N
Recently Added References
  (members only)
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 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

CSD-N Is Starting a Patient Registry

PatientCrossroads logo Circadian Sleep Disorders Network is excited to announce that we are starting a PATIENT REGISTRY, in partnership with PatientCrossroads! By collecting information from as many people as possible we can learn about the commonalities and differences among people with Circadian Rhythm Sleep Disorders, including which treatments work or don't work in the populations actually suffering from these disorders. The data collected will be useful to researchers, and participants who so choose may be contacted by researchers to participate in further research. The registry will be open to participants and researchers world wide. We are currently developing the questions to be used in the initial survey. Stay tuned for further details.

How I Got Accommodations for DSPS

Thanks to member Elyse for writing up her experience getting accommodations for her DSPS. It took tenacity (and a CSD-N sample letter!), but she jumped through all the hoops and eventually received the accommodation she needed.

Non-24 Q&A Now Available in German

Our Non-24 Questions & Answers document is now available in German. Thanks to Christian Sch. for his painstaking work in translating this document.

Circadian Rep Attends Another SDRAB Meeting

Many thanks to Susan Plawsky (a former CSD-N Board member) for representing the CRD community on the (U.S.) NIH Sleep Disorders Research Advisory Board (SDRAB). The SDRAB meets several times a year to set policy for sleep research funded by the US government. The board includes patient representatives. For the first time this year we have a patient representing circadian disorders, Susan, who has DSPD. The SDRAB is revising the NIH Sleep Disorders Research Plan, and Susan is providing valuable input from our perspective. She attended the SDRAB meeting on April 14-15 in Bethesda, MD, and wrote a recap of the meeting with some of her impressions. Also, Peter Mansbach (CSD-N president) spoke during the public comments period to announce CSD-N's plans for a patient registry, among other topics. His presentation is here.

Infographic about Circadian Rhythm Sleep Disorders

infographic thumbnail Circadian Sleep Disorders Network is pleased to introduce an infographic describing Circadian Rhythm Sleep Disorders (CRSDs). Please take a look, at www.circadiansleepdisorders.org/docs/CRSDGraphic.php.

The artwork was created and implemented by our newest board member, Lily Style. For a year or so, the board had been talking about having an infographic made, and just over a month after Lily joined us, we have one completed. Little did we know how talented and experienced she is! The broken clock as central image was her idea, as were the rest of the illustrations. She and other board members cooperated on developing the text, and discussed the colors and elements of design. Lily made changes and posted each iteration, about a dozen of them, for discussion. She most graciously encouraged, and almost always accepted, our input.

Please feel free to repost the graphic to help raise awareness. You can also print it directly from your browser (we suggest making the browser window full screen - the image will resize). We are 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.

WebMD Article on Non-24 Links to Us

WebMD has posted a nice article on Non-24-Hour Sleep-Wake Disorder at www.webmd.com/sleep-disorders/non-24hour-sleep-wake-disorder. They end with a link to our website: "You can also get more information about Non-24, along with tips for managing the condition, on the web site of the Circadian Sleep Disorders Network. Good to get this recognition! They also reference James Fadden's NORD article.

3-Minute Video Introductions to CRSDs

day-night circle We created and posted a series of 3-minute videos introducing Circadian Rhythm Sleep Disorders:

  1. What Are Circadian Rhythms?
  2. What Are Circadian Rhythm Sleep Disorders?
  3. What Is Delayed Sleep Phase Disorder?
  4. What Is Non-24-Hour Sleep-Wake Disorder?
  5. Urgent Need For Awaraeness And Accommodation
These are also collected into a single playlist.

Can Chronotherapy Cause Non-24?

James Fadden, our vice president, has written up the arguments supporting our concern that phase-delay chronotherapy (delaying one's sleep time around the clock) may lead to Non-24-Hour Sleep-Wake Disorder. www.circadiansleepdisorders.org/info/N24chrono.php.

CSD-N Maintains List of Doctors

Find a Doctor! Circadian Sleep Disorders Network is now hosting the "Find a Doctor" page, a list of doctors that patients with DSPD or Non-24 found knowledgeable and helpful. www.circadiansleepdisorders.org/info/doctors.php.

The information was originally assembled in a wiki by several of our members, from comments sent in by patients. CSD-N was invited to take over maintenance of this page. We believe this can be a useful resource for people looking for a doctor knowledgeable about DSPD and Non-24.

Note that we simply post recommendations we receive from patients. We do not have first-hand knowledge of these doctors, and cannot be held responsible for bad recommendations or errors in posted information.

Let us know if you have additional doctors whom you feel are knowledgeable and helpful regarding CRDs.

Write NIH To Add CRSDs To Their Website

NIH has still 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. Dr Twery did advise me that it's a slow process, and would take a long time. But that was over two years ago, and they still haven't made the changes. Dr Twery has assured me again (Apr 2016) that it is "in the works". 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 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 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.

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 (FAQs)

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    
     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 DSPS 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 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 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.

Welzoo Will Donate to CSD-N

Sign up at Welzoo by clicking here. Thereafter, every time you go to their home page, http://www.welzoo.com, Circadian Sleep Disorders Network gets a penny. They're paying for you to view their advertisements. Make it your browser's startup page and watch the contributions add up!

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.

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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Office: 4619 Woodfield Rd, Bethesda, MD 20814

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© 2016 Circadian Sleep Disorders Network
Last modified Jul 23, 2016
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