Updated February 2011
Our web site uses forms in which
you give us contact information (your name, address, daytime telephone number,
and email address) so you can become a member of Ehlers-Danlos National Foundation
(EDNF), request information and support, and contribute to the future health
of the organization. We will then create an account number for you and if you
choose to order from us using a credit card, we will collect your credit card
number and expiration date for that purchase only. All such information is encrypted and credit card information is not retained, kept or stored. We use your membership information only when it
will be important for us to contact you regarding changes to our services, our
web site, new products and programs that we think you'll find valuable. If you
would rather not receive this information, please see the "Updating Your
Information" section below. If we present a co-branded offer with development
partners, it will be clear at the point of collection who is collecting the
information and whose privacy statement applies.
On rare occasions, one of our partners
may require us to share your personal information with them. We will only do
so with your explicit permission first.
We use information gathered about
you from our site statistics (for example your IP address) to help diagnose
problems with our server, and to administer our Web site. We also gather broad
demographic information from this data to help us improve our site and make
your membership experience more enjoyable. This is not linked to any personally
identifiable information, except as necessary to prevent fraud or abuse on our
of who is using the different levels of functionality available to EDNF members.
from one page to another. They are linked to your customer number that is associated
with the information in your account.
This site also contains links to
other sites. EDNF is not responsible for the privacy practices
or the content of such Web sites.
This site has security measures in
place to protect the loss, misuse and alteration of the information under our
control. These include but are not limited to, a security certificate verified by Xramp
Security Services Inc, and the use of 256 bit encryption.
Updating Your Information
As an EDNF member, you may alter
your customer information or opt-out of receiving communications from us and
our partners at any time. We have the following options for changing and modifying
your customer information.
- You may send an email to
. This is essential if you wish the Hinge and Loose Connections to reach you.
- You may send mail to EDNF at 1760 Old Meadow Road, Suite 500, McLean VA 22102
- You may call us at 703-506-2892
The information you send to us may
be stored and used to improve this site and our products, or it may be reviewed
and discarded. However, your information will only be shared with third parties
with your explicit permission.
Only If We Have To
As stated previously in this policy,
we will not share your personal information except with a third party to assist
us in the processing or securing of your personal information or when we are
required by law unless we have given you notice and choice, in the good-faith
belief that such action is necessary in order to conform to the edicts of the
law, or we must comply with a legal process served on our web site. We may also
need to give out your information if one of our partners requires it, but these
situations are extremely rare.
Changes in Our Practices
If we make material changes to our
information handling practices or other privacy aspects, we will post those
changes on this privacy statement, at least 30 days prior to their implementation
or notify you directly via email. Minor changes will be immediately effective