PXE International

Order your PXE T-Shirt today! surveymonkey.com/r/PXEShirtOrde…

PXE International was able to identify our members' top priorities in less than four weeks. We used @LunaDNA_ 's CDI and discovered insights that were not available to us in our 28 years of listening. CDI took away bias and heard the quiet voices.

Happy Halloween from PXE International!

If you have not shared your experience with #PXE yet, please consider taking ten minutes to do so here. If you need assistance please let us know at info@pxe.org or 202.362.9599 and we will be happy to help. pxe.org/research/commo… (2/2)

We want to thank everyone who has taken the health issues survey over the last month! You are contributing vital information to #PXE Research. We have decided to leave this questionnaire open indefinitely to make sure that we get answers from as many PXEers as possible. (1/2)

Legal blindness? Kidney stones? Joint stiffness? Eye injections? None of the above? Tell us about your PXE! Join 452 other people (we need at least 750!) who have responded. If you haven’t filled it out yet please take 10 mins. to share your experience: pxe.org/research/commo…

Fewer than one in 10 people with PXE have replied to the survey - without more of you replying we cannot characterize PXE or find treatments. pxe.org/research/commo… (3/3) #PXE #RareDisease #Research

Please let us know if you need any assistance and a team member will be happy to give you a call! Thank you so much to everyone who's filled out the survey so far, we can't do what we do without you! (2/3) #PXE #RareDisease #Research

52% of PXEers report having experienced pain in their calves when they walk. Does this happen to you? Share your experience and help us find important answers about the effects of PXE by filling out this brief survey: pxe.org/research/commo… (1/3) #PXE #RareDisease #Research

Please let me or any of the other PXE team members know if you have an issue and we will be happy to help. If you need assistance over the phone please let us know. If you haven't completed the survey please take 10 minutes to fill it out here: pxe.org/research/commo… (2/2)

Thank you so so much to everyone who has completed our newest research survey so far! You guys are amazing! We've decided to extend the survey ONE MORE WEEK to really get input from as many PXEers as possible. You now have until next Monday (8/26) to complete the survey! (1/2)

So far 346 out of 4200 PXEers have completed our research survey! Thank you so much to everyone who’s filled it out. If you haven’t please take 10 minutes to share your experience and help us find the answers here: pxe.org/research/commo… SURVEY CLOSES MONDAY (8/19)!

So far 18.9% of PXEers are reporting that they are legally blind. What about you? #ICYMI We’re running a survey! If you are affected by PXE please take 10 minutes to share your experience here: pxe.org/research/commo… Survey closes 8/19! Thank you to everyone who's answered!

This survey will be open for one week, so, if you are affected by PXE, get in there and fill your answers out ASAP! Thank you very much for giving us about 10 minutes out of your day to help us understand how PXE affects you. (3/3)

We put together this brief survey to ask you to tell us more about your experience with PXE. We promise to get these answers (without identifying you) to both PXEers and our researchers. Share your experience here: pxe.org/research/commo… (2/3)

So far 29% of PXEers report having kidney stones. What about you? In our recent "Member Needs" survey you shared that you'd like to know more about common health issues and what symptoms are important. Several researchers working on PXE want the same answers you do! (1/3)

We will announce the rescheduled date soon. Thank you for understanding!

Our webinar with Dr. Jonathan Schoenecker has been postponed. We are so sorry for the late announcement, but a conflict has come up for our speakers. We want to make sure that you all have the best experience possible, and that we are delivering the content you need!

Don't forget to fill out this brief survey about your needs. It closes in ONE HOUR! Thank you!! Let me know if you have any questions. 7542uff5.optimalworkshop.com/optimalsort/8d…

Our current survey about what you want from PXE International will close tomorrow at 5pm! Please take a few minutes to fill this out so that we can meet your needs! We'll post more of these in the future so we can learn how to best serve you. 7542uff5.optimalworkshop.com/optimalsort/8d…

If you haven't completed this brief ranking survey we would really love your feedback! PXE International wants to know what you need the most and how to best serve you. 7542uff5.optimalworkshop.com/optimalsort/8d… Please let us know if you have any questions!