Privacy Policy

This page outlines our policies with regard to your personal information. We do not rent or sell visitor or supporter information to third parties. We will not transfer or share this information in any way.

We collect information when you visit our site, make a donation online, subscribe to our mailing list, purchase something from our shop, join our Contact Registry, and complete a feedback form related to our programs. We try to require the least amount of information necessary. Some information is collected directly through third party services and is thus available to that third party.  Access to our web site is generally unrestricted, and you may browse it anonymously.

Our site uses Google Analytics to provide us with anonymous information about who is visiting our site, how they are finding us and what content is most popular.  This information helps us make decisions about how to serve our visitors most effectively. The data collected by Google Analytics includes your web browser, your approximate location (determined via IP address) and how many pages you visited.  Google also has access to this data, you can view Google's privacy policy here.  Google offers a browser plugin to opt-out of all Google Analytics tracking.

If you have signed up for email updates from us or made an online donation, you will receive an email newsletter informing you of news and updates about our activities. You may choose not to receive further email messages by clicking the "unsubscribe" link at the bottom of the email. We use Mailchimp for sending bulk email. You can view Mailchimp’s privacy policy here.

Donations on our website are facilitated with Donorbox with payment processing by Stripe, PayPal, or bank transfer. Donations can also be made through many third parties that accept donations through an associated foundation and then send the M-CM Network payment for your donation. These third-party entities are governed by their own privacy policies. Usually they share with us the details of your donation, including your contact information. This enables us to acknowledge your support and keep you informed of our activities.

Online shop transactions are processed through Shopify.  When you use our shop, your personal information is available to Shopify. Shopify's privacy policy can be found here.

We do not have full credit card numbers available to us, displayable or downloadable. Credit card information is stored by payment processors such as PayPal and Stripe.

Some data we collect from you, including donor data and mailing list subscription, is stored in our contact relationship database (CRM) for the purpose of keeping you updated on the activities of our organization and news related to M-CM, and documenting your history of involvement with the M-CM Network. Contact information will be stored in the CRM database until the individual modifies it or requests deletion.

We process your personal information as a data controller where such processing is in our legitimate interests as a non-profit organization and not overridden by your data protection interests or fundamental rights and freedoms. Our legitimate interests include working toward the non-profit mission of our organization, developing and maintaining the programs of our organization, and for fundraising activities that support our programs.

Contact Registry data is managed separately from supporter data and maintained in a restricted area of our database. It is held with your consent for the purposes of informing affected families about opportunities to participate in research or new developments that may impact care decisions. We also use it to generate statistics about M-CM incidence. Registrants may request removal of their personal information at any time.

Your internet protocol (IP) address is usually associated with the place from which you use the internet, like your internet service provider, your company or your university. We may use your IP address to help diagnose problems with our server, gather broad demographic information, and administer our website.

Our website utilizes cookies.  A cookie is a small text file that permits us to recognize your browser in order to customize your experience, or permit you to access restricted areas. Cookies do not contain personal information. If you are concerned about your privacy and the use of cookie technology you may set your web browser to notify you when you receive a cookie. You may also set your browser to refuse the cookies our site attempts to send you. However, if you choose to reject cookies from our site, some functions may be limited.

Questions about our privacy policies or requests for retrieval or removal of personal data from the systems that we control can be sent to or M-CM Network PO Box 97 Chatham NY 12037 USA.