PXE eNewsletter August 2018

PXE Member Conference Scholarships Available

Thanks to a generous donor we are able to provide a few scholarships to the PXE International 2018 Member Conference. These scholarships can be used to pay the registration fee. If you are interested in receiving one please send an email to sterry@pxe.org answering the following:

1. Why are you interested in the meeting (for yourself, a loved one)?
2. Assurance that you can get to Philadelphia, and book and pay for your lodging there.
3. Why you have financial needs at this time.

Thank you to our anonymous donor for offering to help!


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September is just around the corner and so is our PXE International 2018 Member Conference! If you haven't registered yet there's still time; click the link below to fill out the registration form. You can also view the agenda to get an idea of what we'll be doing that weekend! We look forward to seeing you in Philadelphia!

View the agenda here

PXE Hangout: October 2nd

PXE Office Hours are now Hangouts! We want to encourage you to come chat with other PXEers about your experience, ask questions, and get to know each other better!

Our next Hangout session will be in October. You can speak with Chris Vocke about PXE and your experience, meet other PXEers, ask questions, and get answers. The next session will be on Tuesday, October 2nd at 4pm EST. Click here to register for this meeting!

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PXE & Life is an ongoing survey that covers the whole spectrum of your experience with PXE. We need everyone affected to fill out the survey to help further research and clinical trials.

You can get started on your survey today by clicking the link below. If you need assistance please send us an email at info@pxe.org or give us a call at 202.362.9599 ext. 222

Start your survey!



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.