Top Tweets for #XPFSG
We are so excited that young adults at the #XPFSG National Conference will be touring @WichitaState and will hear from their Disabled Student Services director, a university professor, and a student with XP about planning for and attending college with XP! #XPYA #ThisisXP
XP has no FDA-approved, insurance-covered treatments, and UV-protection expenses make XP a huge financial burden. Your tax-deductible gift to #XPFSG leverages our ability to connect families with resources and researchers with families. Please donate at https://t.co/a3vzC8zZgu.
Want to protect your hands from damage? Our long-time friends and supporters FOXGLOVES (@glovesulove) have a full line of super-soft gloves (and hats!) for all your Spring gardening! And of course XP-safe gloves as well! https://t.co/2FsxIZGumv https://t.co/FOEul8BtHi #xpfsg
Well said, Paris! You are a fantastic advocate for XP. Keep using your voice~we'll keep listening! @MidnightSun_Mov #ThisisXP #XPYA #XPFSG https://t.co/a3vzC8zZgu
With protection, kids with XP go to school and do many of the same activities as their friends. The downside? It can get very hot, and sometimes people make fun or think they are wearing a costume. We think young @amilota27 & Graycen look adorable--and safe! #ThisisXP #XPFSG
The release of @MidnightSun_Mov has inspired one of our college-aged friends, Paris, to compose this beautifully-written post to share her thoughts about her XP with others. Thank you for shining a light on XP, Paris! #ThisIsXP @OpenRoadFilms #XPFSG (shared with permission)
Way to go Vanessa Mohler! Thank you for creating this awesome awareness video to share on XP and your journey! #XPFamilysupportgroup #RareDiseaseDay #XPFSG #ThisIsXP
https://t.co/4MDm86rH9g
Wouldn’t it be amazing if a group of our XP teens could attend the premiere of Midnight Sun! It would be great to show the faces of XP! @OpenRoadFilms @MrScottSpeer @bellathorne @PSchwarzenegger #ThisIsXP #XPFSG https://t.co/VulHz7doTw
Thanks to all the @MidnightSun_Mov press coverage, we've been feeling the love from folks who want to learn more about XP! Here's info about XP and how XPFSG supports these 1-in-1-million patients and families. @OpenRoadFilms @MrScottSpeer @bellathorne @PSchwarzenegger #ThisIsXP
Happy New Year! #XPFSG
The Danish Ambassador welcomes #idpoc2015 Better quality of life for people with skin conditions-what does it take? #XPFSG
There are more than 3000 different skin diseases in the world. We "XP" are 1 in a 1/4 million! #XPFSG #IDPOC2015
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