Circadian Sleep Disorders Network - Advocating for people with misaligned body clocks
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Why Should I Join?
About Us
How Much?
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* Payment Address *
GuideStar
Tax Deductibility
Privacy Policy
Our Mission
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Join!

Basic dues are $30. Hardship cases may join for as little as $5. Donations (without membership) are welcome too. More details below.

Why should I join?

Our mission promoting awareness and accommodation can only be achieved if we have an interested member base. That gives us legitimacy, and gets people to notice us and to take us seriously. Join so that we can help you, and help many others who suffer from these disorders. Together we have a voice!

Members also receive these additional benefits:

Our near term goals:

Why now?

This is an exciting time for people with circadian sleep disorders, and for this organization. More and more doctors are becoming aware of these disorders, and are taking them more seriously.

We have started a patient registry and survey, which is expected to provide valuable information to researchers as well as study subjects (with their permission, of course).

NIH (U.S. National Institutes of Health) is updating its Sleep Disorders Research Plan with considerable mention of circadian sleep disorders, and we were able to get a CRD patient on the Sleep Disorders Research Advisory Board (SDRAB), the body advising NIH on the update.

We continue developing our plans and strategies, and populating the web site. We need members, so that we can claim to speak for the community, and be listened to and taken seriously.

About us

We are an all-volunteer organization. None of the board members or officers are being paid. We are using our funds for expenses, such as the cost of applying for tax exempt status, printing costs, web costs, etc. We are a 501(c)(3) charitable organization, entirely supported by member dues and contributions.

We see this as an international endeavor. While initially most of our activity will occur in the U.S., the information on our web site is available world-wide, and our brochures will be useful to English-speakers everywhere, and are being translated into other languages. The research we encourage will be useful world wide. In the future we hope to sponsor affiliated groups in other countries.

How much?

Annual dues, which run for the calendar year, are $30 (all amounts are USD). Dues are tax-deductible in the U.S. (see below). For dues received on or after Oct 1, membership is effective immediately but will run through the following year.

If you feel you cannot afford our dues, you may pay less. But a minimum of $5 is required. Please give as much as you can afford.

We would like to encourage people to join as Sustaining Members for $75. Joining at this higher dues level helps us progress more quickly toward our goals. Note that this is still a one-year membership.

And of course, any amount you wish to donate above the basic dues level is welcome as well.

Payment

You can pay through PayPal or by check. You don't need a PayPal account to pay through PayPal, but if you do use PayPal, you will need to enter credit card information, name, address, and email address. We never see the credit card information, you interact directly with PayPal at that point, and only PayPal gets that information. We can see some of the other information. PayPal is easier for you, because you don't have to remember to write a check, address an envelope, and add a stamp. We prefer it too. Of course you can send a check if you prefer.

But you need to submit the following form first. All membership information is confidential - see our Privacy Policy. All information on this form is voluntary, except the amount and your email address, and whether you are joining or renewing. And we'd appreciate your checking the box corresponding to your disorder (if any). This will only be used statistically, to count how many of our members have which disorders.

Clicking on Pay with PayPal takes you directly to the PayPal website, provided you have javascript enabled (most people do). If not, you will get another page with a PayPal button that you must click yourself. Once on the PayPal website you can enter your PayPal password and (if they don't already have it) your credit card or banking information. Note that Circadian Sleep Disorders Network never sees that password or credit card or banking information - that travels directly between you and the PayPal website.

Clicking on the Pay by Check button takes you to a page with instructions for sending your check.

* Member­ship Level:  Regular: $30
 Sustaining: $75
 Hardship: Min $5
please give more if you can:
$ Additional contribution, or donation amount (whole US$)
 Donation only (use box above for amount)
* Email Address:
* Type:New     Renewal 
First Name:
Last Name:
Street Address:
Street Address2:
City:
State/Prov.:    Zip: 
Country:
Phone: (555‑555‑1234)

Type of disorder (check all that apply):
   DSPS:     Non-24:     ASPS:     ISWD: 
   Parent of DSPS:     Parent of Non‑24: 
   Other: 

(preferred)           

NOTE: The Niteowl email list is affiliated with Circadian Sleep Disorders Network, but it is separate, and you have to sign up (free) separately at www.circadiandisorders.org/list.

Payment Address

Checks may be made payable to Circadian Sleep Disorders Network, and sent to our Treasurer:

Asli Kumcu, Treasurer
c/o Circadian Sleep Disorders Network
4619 Woodfield Rd
Bethesda, MD 20814
(This information will appear again on the next page if you click on Pay by Check.)

Income tax deduction

We are a 501(c)(3) tax exempt charitable organization (United States Internal Revenue Service). Your membership dues and donations are tax-deductible in the United States.

GuideStar

Circadian Sleep Disorders Network is a GuideStar Exchange bronze participant.

Privacy policy

GDPR

The General Data Protection Regulations (GDPR) took effect in the European Union, and covers our EU members. We have always repected our members' privacy, and our use of member data has not needed to change. We are clarifying our privacy practices, as required by the GDPR. These practices apply to all our members, not just those in the EU.

What information do we collect?

We are not requiring members to provide any more personal information than they are comfortable providing. However, if you did not give us a valid email address, we would not be able to contact you at all, so we do require that. We ask for home address for future use if we go to printed newsletters.

If you pay using PayPal, only PayPal gets your payment data (bank account or credit card). We never see this information. We can view the name and email address you provide to PayPal, and in some cases the street address as well, but we will not make use of this. You may also pay by check. We will not retain any bank data from the check once it has been deposited and the deposit has been accepted.

How do we use your personal information?

In keeping with the principles set out in the GDPR, we at Circadian Sleep Disorders Network will use your email address, your name, and your address to keep in touch with you, based on what the regulation details as "legitimate interest".

We use your membership data to send email newsletters, other occasional items of interest, and renewal reminders. We do not send advertising for any other organization or company. In the future we may decide to send hard copy newsletters by postal mail.

We expect to send renewal reminders and perhaps some especially important news notes for three years after your membership lapses. After that, we will stop sending you email.

When we start local support groups we may extract email addresses of people in the vicinity, in order to notify them.

Who can see your personal information?

We take your privacy seriously. We understand that you may not want your membership in Circadian Sleep Disorders Network to be public information, and we take every precaution to keep your data private. We will never sell or give away our membership information. That promise is enshrined in our bylaws!

Our membership list is private, and only accessible by the few people with a need to know. Currently, that is the president, vice president, secretary, treasurer, and newsletter editor, since they need to process your membership dues, email the newsletters and election ballots, etc. If in the future they are assisted by other individuals, those others may be given access to membership information, but only by explicit vote of the Board of Directors.

What other companies receive your personal information?

Your right to be forgotten

If you want your personal data to be removed entirely (the "right to be forgotten"), you may request that by sending email to , and we will remove your personal information from our database (in Google Docs) and from MailChimp. For accounting purposes we need to retain your payment history, but it will no longer be connected with a name or other identifying information. We cannot remove email addresses from previous elections from BallotBin. We cannot remove information from PayPal.

Registry and Survey

We have created a patient registry and survey in partnership with Invitae Corp, and strongly encourage our members to register and to participate. The personally identifying data you provide is between you and Invitae, the registry hosts. We at Circadian Sleep Disorders Network do not see any personally identifying information in conjunction with the data. We do have access to your answers to the survey questions, but without knowing who those answers are associated with. If you explicitly allow Invitae to share your email address with us, they do so, but that is completely separate from the survey. We cannot connect your email address with your survey answers.

The privacy of your personally identifying information is determined by Invitae. They agree to abide by HIPAA regulations (U.S.) and GDPR (E.U.). You may request deletion of your data from Invitae, and your personal information will be deleted, but any de-identified data that is already in process of being analyzed can not be recalled.

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.

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Questions or problems?

You can email us at .

Note that our response will come from a different email address, so you can't be filtering out all new addresses as spam, or you won't get our reply.

© 2018 Circadian Sleep Disorders Network
Last modified May 30, 2018
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