Days To Go





The National Organization for Rare Disorders has created this privacy statement in order to demonstrate our firm commitment to privacy. The following discloses our information gathering and dissemination practices for this Web site: Rare Disease Day US,


Your Internet browser has a feature called “cookies” which store small amounts of data on your computer about your visit to Rare Disease Day US. 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 Rare Disease Day US, 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 Rare Disease Day US 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 Rare Disease Day US website contains links to other Web sites. Rare Disease Day US 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.

Intellectual Property Rights 

The Rare Disease Day logo is a registered trademark, owned by the European Organisation for Rare Disorders (EURORDIS). It may not be used for commercial purposes. It may only be used in support of activities related to Rare Disease Day and can only be displayed in the spirit in which it was intended – a symbol of global partnership in the search for ways of improving the lives of those affected by rare diseases. The logo, if used, should be stand alone, in the format available on the global website. You may not change the design, color or proportions of the logo, or crop or combine it within any other logo. Non-compliant use of the logo will constitute a material breach of EURORDIS’ trademark rights. NORD, as an official U.S. sponsor is delegated with the task of ensuring proper use of the logo and mention of the campaign.

Reproduction of the materials included on this site, whether in paper or electronic media or other forms, is only authorized for personal and non-commercial use and in support of activities related to Rare Disease Day, including but not limited to, fundraising activities for a personal event and/or organization. Click here for more information.

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 or sending a letter to the following postal address:

National Organization for Rare Disorders

55 Kenosia Avenue
Danbury, CT 06810

News Blasts

Rare Disease Day US 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

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.