Welcome to PXE International - Registration is Free!

To register with PXE International, please fill out the Registration Form completely.

When you register with PXE International, you are added to our database of individuals affected with pseudoxanthoma elasticum (PXE). Your contact information will never be shared with anyone unless you give us permission to do so in your registration, and then it will only be shared with affected individuals who are interested in connecting with other affected individuals.

International importance

Registering with PXE International is of international importance. It provides critical data for helping nations recognize that funding PXE research is important. Registration helps PXE International help you - by being counted, by participating in research. Your voice for PXE will be heard!

Monthly eNewsletter

Upon registration, you will begin receiving our Monthly eNewsletter packed with the latest information in PXE research, fundraising, legislation, stories about other PXEers, and news from around the world. 

Email lists

Upon registration you are automatically subscribed to the PXE Announcements email list, where PXE International staff post one-way important announcements that can't wait for the monthly eNewsletter. The registration process also provides the opportunity to sign up for the PXE Chat email list. PXE Chat is open to anyone who is looking for an online community of support - with wide-ranging, and not necessarily PXE, topics.

Doctor referrals and PXEers in your area

Registration entitles you to receive doctor referrals and the contact information of individuals affected by PXE in our database who have agreed to share their contact information. 


Change of address

If you are already registered with PXE International but would like to submit a change in address or other contact information, please email us at or call us at 202.362.9599.

Or you may use the registration form to change your contact details and preferences.