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PXE International Conference 2020: Virtual Meeting

October 16 - 18, 2020

To register - click this link.

Every two years, since 1997, PXE International has held a conference for people affected by PXE and their loved ones. This year will be different. Because of the pandemic, we will be holding this on Zoom. This is the 25th anniversary of PXE International, but we will have to wait to celebrate until 2022, provided we can gather that year. Maybe we can all still raise a glass together virtually!

Amsler Grid Vision Check

Test the vision in each eye every day.  Early detection of a vision problem increases the chance of saving eyesight through timely treatment.  The Amsler Grid is a simple test of vision quality that detects even minor changes when they first occur.  This easy test only takes a moment for each eye.  If you notice any changes in the appearance of the grid such as distortion, blurring, discoloration, dark or missing areas of the grid, or any other changes, call and visit your retinologist immediately!  Do not wait to see if the changes will clear up with no intervention. 

 

PXE International BioBank and Clinical Data Registry

PXE International BioBank and Clinical Data Registry

With samples and clinical data numbering in the thousands, the PXE International Biobank is by far the largest collection for pseudoxanthoma elasticum (PXE) in the world. An easy application process allows researchers from all over the world access to these resources. And hundreds of research projects have used them.

Learn more about the PXE International BioBank and Clinical Data Registry

PXE Phenodex

PXE Phenodex

SEPTEMBER 15, 2007
By Emilie Lamb, Research Assistant, PXE International
With Sharon Terry, Executive Director, PXE International

The original paper was published in the Journal of Medical Genetics, October 2007, pages 621-628.
This summary first appeared in the Fall 2007 PXE MemberGram.

Support Services

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.

What are clinical trials?

Clinical trials are structured research experiments used to advance medical knowledge and patient care. This means that there is a very clear and well-formulated process to test something that might be useful in treating a condition.  Trials often investigate new treatments, interventions, therapies and approaches to a disease or symptom.  They might also compare the effectiveness of different treatments, for example, does one drug relieve leg cramping more than another.

If this information was helpful to you, please consider making a quick donation today because every penny counts. 100% of donations go to support and research.