Post and Privacy Policy

The National Organization for Rare Disorders has created this statement to demonstrate our firm commitment to maintaining a safe and respectful space for all.


NORD welcomes your thoughts, comments, suggestions and questions.  However, we will not allow comments that contain vulgar or abusive language, personal attacks of any kind, or offensive terms that target specific ethnic or racial groups. In addition, NORD will not allow comments that are spam, are clearly “off topic” or promote services or products. All links posted as comments will be reviewed and may be deleted if deemed inappropriate. Comments that make unsupported accusations will also be subject to review. NORD reviews and moderates all comments posted on this site before the information is live.


Your Internet browser has a feature called “cookies” which store small amounts of data on your computer about your visit to NORD. Our site uses cookies to to save your password so you don’t have to re-enter it each time you are required to log in.

Traffic Data

Each time a visitor comes to NORD, we collect some basic technical information. We use software to keep track of traffic to our site and acquire such information as the location from which the traffic originates and which particular pages within NORD are being viewed and for how long.

Third Parties

Your name or other information will not be shared with third parties.


This site has security measures in place to protect the loss, misuse and alteration of the information under our control. Our computer networks and those of our hosting company are protected by passwords, firewalls and other security.

News Blasts

NORD offers a periodic e-mail service to those who are interested in hearing about the latest news in the rare disease community. These “News Blasts” are strictly opt-in, and you can sign up at You will not receive them unless you have voluntary subscribed to the service. If you ever wish to modify your address or unsubscribe, please send an e-mail to


NORD and National Organization for Rare Disorders are registered trademarks of the National Organization for Rare Disorders.

Contacting NORD

If you have any questions about this privacy statement, the practices of this site, or your dealings with this site, you may contact us at