PXE International strives to connect people with other people with PXE, the research about PXE, and with our organization in order to provide the best possible care and services to those we represent. Here are several ways you can stay better connected with PXE International and all the services we provide to support you.
Registering with PXE International provides critical data that helps nations around the world 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!
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.
PXE International sends out a monthly eNewsletter filled with the latest updates on research, fundraisers, PXE-er stories and more! Sign up to start receiving our eNewsletter here!
Follow us on Twitter for updates, links, and more!
Join our PXE Google Chat to connect with other PXE-ers, ask questions, and share stories through this email list!
Where in the World are PXE-ers
The PXE International Registry includes 4,354 affected individuals. If PXE affects an estimated 1 in 50,000 to 100,000 people and there are 6 billion people in the world, then there are 60,000 to 120,000 people in the world with PXE. Help us find them and make sure to fill out our registration form if you are affected!
Note 1: Map points represent the city center, and not an individual address.
Note 2: In addition, there are 130 in the US without a state designated, 11 in Canada without a province designated, and 116 without a country designated.
|Australia-229||Indonesia-1||Rep. of Azerbaijan-1|
|Egypt-2||Netherlands-95||United Arab Emirates-2|
|Finland-9||Netherlands Antilles-1||United Kingdom-321|
|Indiana-56||New Mexico-13||West Virginia-26|
|Kentucky-38||North Dakota-8||Washington, DC-3|
|British Columbia-34||Nova Scotia-9||Saskatchewan-5|
* Distribution as of 07/19/2015