serving those affected by pseudoxanthoma elasticum
Washington, DC
Joined November 2008
- Tweets1.4K
- Following0
- Followers431
- Likes103
PXE International retweeted
Really looking forward to the @DerbySportive Sportive tomorrow I’ll be there most of the day flying the @pxe flag and riding my re-vamped #teampxe racer 🚴🏻♂️🚴🏻♂️ thanks @0FFUD and @Cycle_Derby for the amazing support 😀👍
PXE International retweeted
Morning all. Well, it’s here, Manchester Marathon day!!!! I’ve had a ridiculously rubbish nights sleep but feeling positive, great what a cup of coffee can do!!! The internet and my phone are playing up so updates today might be... justgiving.com/teampxeuk?utm…
PXE International retweeted
November is #FamilyHealthHistoryMonth. Help us learn about #genetics and #FamilyHealthHistory! Very brief survey here: surveymonkey.com/r/9VX8YFV.
PXE International retweeted
@pxe this could be big!!!!!!
Al and his team are some our most enthusiastic supporters. We felt it was time to support him back so in 2019 we are proud to be supporting #TeamPXE in raising awareness and money to support research into rare... facebook.com/cyclederbysport…
PXE International retweeted
PXE International conference in full flow. Amazing turnout from lots of people from all over the… instagram.com/p/BhevEainx3Q/
PXE International retweeted
Vista Center in #PaloAlto offers a monthly adaptive yoga class specifically designed for low vision and blind clients. Class dates are April 20, May 18, June 15 and run from 1:30 pm to 3:00 pm A $10 donation per session is requested. To register: [email protected]
ALT Five participants sit on mats or a chair with arms outstretched in a yoga pose. A guide dog sits nearby as well.
PXE International retweeted
Pseudoxanthoma Elasticum - PXE, A Real Life Story youtu.be/GwCabB6_3Sg via @YouTube #pxe #genetic #pseudoxanthoma elasticum
PXE International retweeted
A4: My story ow.ly/Eymq30iyYMf w/ @ElizabethTerry and @PatTerry #facingfear #livingwith @pxe #NIHchat
PXE International retweeted
A2: Rare diseases are caused by variations in genes. Sometimes autosomal dominant, sometimes recessive pxe.org/about-pxe/patients/p… @pxe #NIHchat
PXE International retweeted
@SharonTerry62 @GeneticAlliance @pxe Sharon Terry is President of Genetic Alliance, a network of more than 10,000 organizations, and the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum.
checkrare.com/video/science-…
PXE International retweeted
We’re having a #pxe fundraising auction, it’s a good one! If you’re a footy fan this one is for you #dcfc #dcfcfans #dcfc #richardkeogh thanks so much @RichardKeogh_6 @dcfcacademy extremely generous 👍👍@pxe facebook.com/events/14449075…
PXE International retweeted
Did you know we have a #teampxe fundraising page? Photos, blogs, videos, supporter links and upcoming events. Let me know what you think #fundraising #charity #pxe @pxe @rarediseaseday @rarediseaseuk alditheridge.wixsite.com/pxe…
PXE International retweeted
Just put up a #blog about our fancy dress #charity #fundraising party from last Saturday feel free to take a look lots of pics too @sharonfterry @pxe #teampxe goo.gl/DE66aC
PXE International retweeted
@pxe Have a special Valentine? Tell them how special they are with a Valentine gift from Dare to be Rare and earn money for PXE at the same time. Shop daretoberare.org
PXE International retweeted
#PCORnet reflects on tools & resources in 2017 that allow for better, faster & cheaper research. Read: bit.ly/pnetnwyr
PXE International retweeted
mom becomes citizen scientist to find gene behind her kid's pseudoxanthoma elasticum ow.ly/pFV630cNOjX @RareDiseases @raredisorders
PXE International retweeted
According to the American Foundation for the Blind, Braille is a "system of raised dots that can be read with the fingers by people who are blind/who have low vision". There are versions of Braille in Chinese, Arabic, Spanish, & many other languages.
Celebrate #WorldBrailleDay!
PXE International retweeted
#PXE @pxe Dec 20 is the last day to shop Dare to be Rare in time for Christmas. Choose PXE International at checkout and give rare gift. daretoberare.org
