PXE eNewsletter January 2018

PXE International 2018 Goals

In 2018, PXE International will build new bridges within the PXE community by hosting several virtual meetings and a few conferences. We are also in the planning stages of clinical trials that will explore potential treatments for the symptoms of PXE!

Save the date! We are excited to announce our next BIG PXE meeting for you, your families, and friends to learn about PXE, and to network with others!

The 2018 PXE Conference will be held at the PXE International Center of Excellence in Research and Clinical Care at Thomas Jefferson University in Philadelphia, Pennsylvania on September 28-30, 2018. More information to come!

What are your 2018 goals? Let us know!

PXE & Life

We need you to participate in our PXE & LIFE survey! This survey asks questions about your experience with PXE and will help us move clinical trials forward. We need you!

Take the survey on our website or over the phone! If you need assistance please contact our Communications Specialist, Sam Coley. She can be reached at scoley@pxe.org or over the phone at 202.362.9599x222

Get started here!

Veggie/Vegan Study

Thank you so much for your participation in PXE LAB! We have been thrilled to see such a great response from caregivers, families, researchers, and the PXE community. Many of you shared about your lifestyle as a vegetarian or vegan and how you believe it has impacted living with PXE.

Can living a vegetarian or vegan lifestyle lead to fewer PXE related symptoms? We are asking all PXEers to take this brief survey about your eating habits to answer this question! Help us learn more about how PXE affects you!

Share your experience here!

PXE International Virtual Meetings

PXE International is currently hosting several online virtual meetings in various time zones across the world. Click the link below to find the meeting nearest you and connect with PXEers! Once you find your meeting, please register to join and you will receive a confirmation screen with information about how to access the meeting!

Find your virtual meeting!

UK residents: We will have a PXE meeting in London for you to network with others on April 12th in the evening. Venue to be announced shortly (let us know if you know of a good location).


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.