PXE Community

You spoke, we listened. Let’s get to work!

A message from Sharon!

Welcome to PXE LAB, a forum for PXEers and researchers to brainstorm, collaborate, and develop studies to better understand the effect of nutrition, diet, and exercise on PXE. PXE International promotes research driven by, and centered on, people affected by PXE. PXE LAB is a great extension of our research mission. The goal is to answer research questions that are most important to you!

Here at PXE LAB, you can comment, ‘like’, and share ideas. Join the discussion now!

Latest Announcement

Next Step: Transform YOUR Ideas into Research Projects!

Sharon Terry's picture

Thank you so much for your participation in PXE LAB! We are thrilled to see such a great response from caregivers, families, researchers, and the PXE community. Some common themes came up about nutrition and exercise. The next step is turning these questions into actual research studies!

Click on a banner to learn more!

Leg Pain Study

Veggie/Vegan Study

Long-term Follow-up Study

Current Discussions

PXE LAB

PXE International promotes research that is driven by, and centered on, people affected by PXE. PXE LAB is a forum for PXEers and researchers to brainstorm, collaborate, and develop a research study on nutrition and exercise.

PXE Veggie/Vegan Study

How does a vegetarian or vegan diet affect symptoms caused by PXE?

PXE Leg Pain Study

How does exercise impact the pain of intermittent claudication (lower leg pain)?