#rarediseaseweek

Whoever said sick and disabled kids don't know how have a good time never matter#DisabledIsNotABadThing #Selfie #sickchicks #spoonie #spooniefriends #claimingcrip #cripplechic #ceepstyle #cripplepunk #capitalcitycripplepunk #rarediseaseweek #rarediseaseday (at Washington, District of Columbia)

@shirastrongin is the best goofy face selfie partner#DisabledIsNotABadThing #CheekyNotTragic #Selfie #sickchicks #spoonie #spooniefriends #claimingcrip #cripplechic #ceepstyle #cripplepunk #capitalcitycripplepunk #rarediseaseweek #rarediseaseday (at Washington Hilton)

OK so it may be Wednesday, but I'm still going to throw it back to the first time I met @shirastrongin in person and got to hang out with her and get the amazingly awesome @eiryn ! I love both of these humans more than I can put into words, and I'm so grateful to have them in my life! One of the main things I always go back to when people talk about disability and illness as pure tragedy is all the amazing people and has brought into my life, and allowed me to call sisters, brothers, siblings, family, and friends. I can honestly say that for every bad moment that comes with this life I can count at least five good ones. I know this sounds cheesy and sappy, but it's the truth! From the day I was born my life has done anything but go as planned, and I would never say it's been easy, but I know beyond a shadow of a doubt that I wouldn't trade it for anything else. ❤️️❤️️❤️️#CheekyNotTragic #Selfie #sickchicks #spoonie #spooniefriends #claimingcrip #cripplechic #ceepstyle #cripplepunk #capitalcitycripplepunk #rarediseaseweek #rarediseaseday #cripplechic #disabledindc (at Washington, District of Columbia)

Today marks the last day of Rare Disease Awareness Week!!!! We love our Emma and we are so thankful to our friends and family who rocked those stripes all week long to help spread awareness for everyone who lives with a rare disease!! We #showourstripes to help spread awareness for Emma’s rare diseases of Bosch-Boonstra-Schaaf Optic Atrophy Syndrome and Optic Nerve Hypoplasia!! With Emma’s BBSOAS she is one of less than 150 people worldwide. This mutation is what causes many of the medical issues Emma battles every day but this girl takes them all (and her 7 weekly therapies in stride)!! ⁣ ⁣ #emmaleimomi #raredisease #rarediseaseday #rarediseaseweek #boschboonstraschaafopticatrophysyndrome #bbsoas #nr2f1 #geneticmutation #opticnervehypoplasia #onh #sheisrare #rarediseasewarrior #showyourstripes #careaboutrare #wecareaboutrare https://www.instagram.com/p/B9K3Wa9lQjX/?igshid=oze9ugz0j4qo

American Kidney Fund @KidneyFund Having a child diagnosed with #cystinosis can be overwhelming. Our latest resources can help parents or caregivers learn about how to help their child manage and cope with cystinosis. #RareDiseaseWeek #RAREis (at Hammond, Indiana) https://www.instagram.com/p/B9FbM-jg7UQ/?igshid=1jmbvb2fz9pv2

AKF Advocacy @AKF_Advocacy American Kidney Fund is proud to participate in today’s #RareDiseaseWeek Legislative Conference to advocate on behalf of rare kidney diseases and patients we serve. @HorizonNews @MNK #RareDC2020 (at Hammond, Indiana) https://www.instagram.com/p/B9C08b7gr1h/?igshid=1f2p3fj24rjus

Attending on @rdla Then make a lasting impression! http://tinyurl.com/sdr5gab

The NapCave Let's Conquer Rare Disease Throw Blanket http://tinyurl.com/yx6ajfrx