Top Tweets for #FacesofRare
Behind every face is a unique and powerful story. This #RareDiseaseDay, read the stories behind the faces on our #FacesOfRare wall and add your own photo celebrating yourself or a loved one, living or in memory, here: https://t.co/md2rKXhi2T
#ShowYourStripes #RareDisease
Behind every face is a unique and powerful story. This #RareDiseaseDay, read the stories behind the faces on our #FacesOfRare wall and add your own photo celebrating yourself or a loved one, living or in memory, here: https://t.co/md2rKXhi2T
#ShowYourStripes #RareDisease
This #RareDiseaseDay, read the stories behind the faces on @RareDiseases #FacesOfRare wall. Add your own photo celebrating yourself or a loved one, living or in memory, here: https://t.co/6rUj6TBAzN #ShowYourStripes #RareDisease #RareandReady
Behind every face is a unique and powerful story. This #RareDiseaseDay, read the stories behind the faces on our #FacesOfRare wall and add your own photo celebrating yourself or a loved one, living or in memory, here: https://t.co/md2rKXhi2T
#ShowYourStripes #RareDisease
Behind every face is a unique and powerful story. This #RareDiseaseDay, read the stories behind the faces on our #FacesOfRare wall and add your own photo celebrating yourself or a loved one, living or in memory, here: https://t.co/md2rKXhi2T
#ShowYourStripes #RareDisease
We continue to be loud for the ones whose memories we carry with us and for the ones still with us fighting an incredible fight.
We need a #RareDiseaseInstitute
#RareDiseaseTruth #FacesOfRare
My #RareDiseaseTruth: not being able to answer my children's questions about why their brother died from #NEC.
Why did Micah get NEC?
Why did Micah get sick, get better, get sick, & then die? Why didn't he get better?
Would Micah still be here if they listened to you & daddy?
Rare is roaring this week! So many badass hashtags to follow:
#RareDiseaseTruth
#FacesOfRare
#RareSnapshots
#ISeeU
#RareDiseaseDay
#RareDiseaseInstitute
Let's Go Rare!
Cough.. cough.. @NIH
@NeenaNizar @Twitter @NIH Meet Elijah! Diagnosed in utero with Edwards Syndrome, Full Trisomy 18. Fun fact: Elijah loves to clap and try to toss a ball! #RareDiseaseTruth Let's go RARE!
@NeenaNizar @Twitter @NIH My strong Pea-Pie(Penelope) has Classic Galactosemia and Chiari Malformation post decompression brain surgery #rarediseaseday
Patient. Caregiver. Advocate.
These words accurately describe me & I’m very proud of that. But, they are just a part of me. I’m a mother, friend, coworker, & more. My #RareDisease doesn’t define my whole being. We all have a story worth sharing.
#RareDiseaseTruth
#Share4Rare
Hello #FacesOfRare, I'm Mackenzie & my #RareDiseaseTruth; I live with #EhlersDanlosSyndrome, #POTS, & many unknowns. My first major medical event was at 18 months, but I went #misdiagnosed until age 26. We need a #RareDiseaseInstitute at @NIH so that no one goes #undiagnosed 🦓
My beautiful Riaan. May we find you a cure. May you smile that sweet smile for many decades to come.
#FacesofRare #CureRiaan #RareDiseaseDay
Riaan enjoys "Hippos Go Berserk." Did you catch the look he gives the camera when his parents try to be cool? #Love4Riaan #FacesofRare #RareDiseaseTruth
Here’s my #FacesofRare…..some more wrinkles, but a lot more wisdom. Grateful for the progress being made for women with #FabryDisease, but there’s much more work to be done. We can’t stop fighting for ourselves and our loved ones. @NIH
#RareDiseaseTruth #HealthEquity
Let's flood @Twitter with Faces Of Rare from around the world. Post a pic of your loved one, and name of RD, and a fun fact. Can we get 7K faces by Feb 28? Let's show @NIH why we need a #RareDiseaseInstitute
Let's Go Rare!
#RareDiseaseTruth
There is nothing more heartbreaking than to see the ones you love suffer in pain.
It is this indescribable love that propels rare disease parents n caregivers to fight every day for new treatments n therapies.
#RareDiseaseTruth #FacesOfRare #JansensDisease #ValentinesDay2022
“Love is really the most important thing when it comes to living, with or without a rare disease. The support that comes from love makes a lot of the hard days easier.” -Riley
#RDD2022 #EverydayIsRareDiseaseDay #CLOVESLifeMotto
Hi! I’m Beth and I’m one of the #FacesOfRare! I have hypermobile Ehlers-Danlos Syndrome (hEDS), but I don’t let that stop me from working to solve other human diseases with a genetic component, like Alzheimer’s!
Let's flood @Twitter with Faces Of Rare from around the world. Post a pic of your loved one, and name of RD, and a fun fact. Can we get 7K faces by Feb 28? Let's show @NIH why we need a #RareDiseaseInstitute
Let's Go Rare!
#RareDiseaseTruth
#FacesOfRare
@NIH I am Jill, a #RareDisease patient forced to give up my career at only 32 bc we don't know enough about #CRPS/RSD & its comorbidities to adequately treat it, much less cure it
A #RareDiseaseInstitute wld give me hope for my future despite my degenerative disease
Seizures suck. She's had over 40,000 of them in her short lifetime. But Seizure Response Dogs are awesome. #FacesOfRare @NIH #RareDiseaseInstitute @CanineAssistant @LGS_Foundation #RareDisease #LennoxGastautSyndrome #SeizuresSuck #RareDiseaseTruth
Let's flood @Twitter with Faces Of Rare from around the world. Post a pic of your loved one, and name of RD, and a fun fact. Can we get 7K faces by Feb 28? Let's show @NIH why we need a #RareDiseaseInstitute
Let's Go Rare!
#RareDiseaseTruth
@Purrfectly_Rare @NIH Great picture & post, Marni! You are definitely one of the special #FacesOfRare. As an ally of the #RareDisease community, I hope with all my heart that @NIH establishes a #RareDiseaseInstitute!
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