Privacy Policy
myEMPD.com is a patient-led website for people affected by extramammary Paget’s disease (EMPD). This policy explains what information the site collects, why, and what happens to it. Please also see our Cookie Policy.
Information collected automatically
When you visit, some basic information is collected automatically: browser type, language preference, the website that referred you, the date and time of your visit, and your IP address. This is collected by our website host, Squarespace, and by Google Analytics. We use it only to understand how visitors use the site so we can improve it. See Squarespace’s privacy policy and Google’s privacy policy for how they handle this information.
Contact form
When you use the contact form, we ask for your first and last name, email address, subject, age, location, and message. We use this information only to answer your inquiry.
Support group registration
When you register for the myEMPD support group, we ask for your first and last name, email address, age, whether you or a family member has been diagnosed with EMPD, and a message about your situation. You can also give your Facebook profile name, your Facebook profile link, and your location. We use this information to confirm your registration and invite you to the private Facebook group. If you are not on Facebook, we use it to send you general EMPD information. Only the support group administrators see this information. The support group is hosted in a private, unlisted Facebook group, so your activity in the group is also covered by Facebook’s privacy policy.
Emails
If you contact us, you will get a reply and possibly a follow-up. By contacting us or registering for the support group, you understand that you may receive an occasional email from myEMPD.com with EMPD-related information. These emails are sent through Squarespace Email Campaigns, which stores your name and email address for that purpose. To stop receiving emails, reply to any email from us, use the contact form, or click the unsubscribe link in the email, and we will remove you.
Sharing your information
We do not sell, rent, or trade your information. myEMPD.com has no advertising and shares nothing with advertisers. We share information only with the services that run the site (listed above), when you give us permission, or when the law requires it.
How long information is kept
We keep information only as long as we need it for the purposes above, or as long as the law requires.
Your choices
You can ask to see, correct, or delete the information you have given us. Send your request through the contact form.
Children
myEMPD.com is not intended for anyone under 18, and we do not knowingly collect information from minors.
Links to other websites
myEMPD.com links to hospitals, research sites, news stories, and other outside websites. Their privacy practices are their own. A link is not an endorsement.
About myEMPD.com
myEMPD.com is paid for by EMPD patients. Nothing on this site is medical advice.
Changes to this policy
We may update this policy. The date below shows when it last changed.
Last updated: October 1, 2026