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Web Policies

The National Organization for Rare Disorders has created these web policies in order to demonstrate our firm commitment to privacy. The following discloses our information gathering and dissemination practices for this Web site: RareAction Network,


Your Internet browser has a feature called “cookies” which store small amounts of data on your computer about your visit to the RareAction Network. Our site uses cookies to keep track of your shopping cart and to save your password so you don’t have to re-enter it each time you are required to log in. In the future, cookies may be used to deliver content specific to your interest.

Traffic Data

Each time a visitor comes to RareAction Network, 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 RareAction Network are being viewed and for how long. We may know for instance, that we had 10,000 hits and 2,000 individual visitors to our Web site today, but we do not know their names, addresses, or other personal information.

Third Parties

Your name or other information will not be shared with third parties unless you have specifically requested us to do so, such as when you choose to participate in our Networking Program.


The RareAction Network website contains links to other Web sites. RareAction Network 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. Our computer networks and those of our hosting company are protected by passwords, firewalls and other security.

Is credit card / transaction information secure?

We care about the safety and security of your transaction. We use SSL (Secure Sockets Layer) to communicate with your browser software when you order from us online and thereby provide us with credit card or similar information. SSL is the industry standard security protocol, which makes it extremely difficult for anyone else to intercept your credit card / transaction and order information that you send us when you submit your online order. We take precautions to safeguard your credit card data in our internal systems.

Order Forms

Our site uses an order form for customers to request information, products, and services. We collect contact information (like e-mail address), and financial information (like account or credit card numbers). Contact information from the order forms is used to ship purchases, and may be used to send information about our organization. The customer’s contact information is also used to get in touch with the visitor when necessary. Users may opt-out of receiving future mailings by sending an e-mail to [email protected] or sending a letter to the following postal address:

National Organization for Rare Disorders

55 Kenosia Avenue
Danbury, CT 06810

News Blasts

RareAction Network 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. 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 [email protected].

Contacting NORD

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

NORD Links


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