Collection and Use
The Charcot-Marie-Tooth Association is the sole owner of the information collected on this site. We will not sell, share, or rent this information to others in ways different from what is disclosed in this statement. We may, from time to time, supplement the information we collect about you with information from third parties in order to better serve you. We may combine information we collect. As described below, the Charcot-Marie-Tooth Association collects information from our users at several different points on our website.

The Charcot-Marie-Tooth Association will not sell, trade or share a donor’s personal information with anyone else, nor will it send donor mailings on behalf of other organizations, unless the donor has given the CMTA specific permission to do so.

Log Files
We use IP addresses and cookies with third party vendors to analyze trends, administer the site, track users’ movements, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.

This website contains links to other sites. Please be aware that the Charcot-Marie-Tooth Association is not responsible for the privacy practices of other sites. We encourage our users to be aware when they leave our site and to read the privacy statements of each and every website that collects personally identifiable information. This privacy statement applies solely to information collected by this website.

eNews Alerts
If a user wishes to subscribe to our eNews Alerts, we ask for contact information such as name and email address. Users who no longer wish to receive our eNews Alerts, which may include information about promotional offers from our partners or the PDF version of our quarterly magazine, may opt-out of receiving these communications by using the unsubscribe link in the footer of the email or by emailing us at

Surveys & Contests
From time to time, our site requests information from users via surveys or contests. Participation in these surveys or contests is completely voluntary, and the user has a choice whether or not to disclose this information. Information requested may include contact information (such as name and shipping address), and demographic information (such as zip code, age level). Contact information will be used to notify the winners and award prizes. Survey information will be used for purposes of monitoring or improving the use and satisfaction of this site.

Special Offers
Established members will occasionally receive information on products, services, special deals, and a magazine. Out of respect for the privacy of our users, we present the option to not receive these types of communications. Please contact if you would prefer not to receive these types of communications.

Site and Service Updates
We also send the user site and service announcement updates. Members are not able to un-subscribe from service announcements, which contain important information about the service. We communicate with the user to provide requested services and in regards to issues relating to their account via email or phone.

Correction/Updating Personal Information
If a user’s personally identifiable information changes (such as his or her zip code), or if a user no longer desires to be a member, we will either correct, update or remove the user’s personal data or we will provide the user with the means to do so. Users can request correction/removal of information by emailing

Notification of Changes
We will use information in accordance with the privacy policy under which the information was collected. However, if we decide to change our privacy policy, we will post those changes on our Homepage so our users are always aware of what information we collect, how we use it, and under what circumstances, if any, we disclose it. If at any point we decide to use personally identifiable information in a manner different from that stated at the time it was collected, we will notify users by way of an email. Users will have a choice as to whether or not we use their information in this different manner.