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Staying Connected

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.

Register now!

If your information has changed since you registered let us know!

PXE International hosts a closed Facebook group for those affected by Pseudoxanthoma elasticum. This group serves as community of support for PXE-ers to connect with each other and discuss their experiences with this rare disease.

Join us on Facebook!

 

PXE eNewsletter

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!

Twitter

Follow us on Twitter for updates, links, and more!

PXE Chat

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.


 

International 

   
Albania-1 Grenada-1 Peru-3
Algeria-1 Guatemala-1 Philippines-1
Argentina-8 Honduras-1 Poland-6
Aruba-2 India-16 Portugal-19
Australia-229 Indonesia-1 Rep. of Azerbaijan-1
Austria-3 Iran-4 Romania-7
Bangladesh-1 Ireland-8 Saudi Arabia-1
Belgium-16 Israel-6 Serbia-1
Brazil-30 Italy-160 Singapore-1
Bulgaria-5 Japan-2 Slovakia-2
Canada-226 Jordan-2 Sri Lanka-1
Chile-7 Korea-2 South Africa-252
China-4 Latvia-1 Spain-25
Colombia-1 Lebanon-2 Sweden-18
Croatia-1 Malaysia-5 Switzerland-13
Cyprus-2    Malta-3 Syria-1
Czech Republic-1   Mexico-3 Thailand-1
Denmark-11 Morocco-7 Tunisia-2
Dominican Republic-1  Namibia-2 Turkey-18
Ecuador-2     Nepal-1    Ukraine-1
Egypt-2 Netherlands-95 United Arab Emirates-2
Finland-9 Netherlands Antilles-1 United Kingdom-321
France-120 New Zealand-18 Uruguay-5
Gabon-1 Norway-11 Venezuela-3
Germany-316 Pakistan-5 Vietnam-5
Greece-8 Palestine-1 Zambia-1

 

 

United States

   
Alabama-32 Louisiana-48 Ohio-87
Alaska-3 Maine-7 Oklahoma-30
Arizona-36 Maryland-38 Oregon-34
Arkansas-23 Massachusetts-62 Pennsylvania-83
California-196 Michigan-77 Rhode Island-16
Colorado-41 Minnesota-51 South Carolina-45       
Connecticut-31            Mississippi-17 South Dakota-6
Delaware-7 Missouri-48 Tennessee-51
Florida-148 Montana-20 Texas-95
Georgia-69 Nebraska-14 Utah-24
Hawaii-13 Nevada-9 Vermont-5
Idaho-13 New Hampshire-20         Virginia-80
lllinois-59 New Jersey-56 Washington-60
Indiana-56 New Mexico-13 West Virginia-26
Iowa-20 New York-143 Wisconsin-32
Kansas-34 North Carolina-80 Wyoming-5
Kentucky-38 North Dakota-8 Washington, DC-3  

  

 

Canada

   
Alberta-26  New Brunswick-4         Quebec-22
British Columbia-34      Nova Scotia-9  Saskatchewan-5     
Manitoba-9  Ontario-116  Yukon Territory-1

 

 

* Distribution as of 07/19/2015