Top Tweets for #ShowMeYourRare
Opportunity to take part in research (boys aged 4+) to help understand more about the social difficulties some boys with FXS experience:
#fragilex #fragilexsyndrome #learningdisability #rarereality #ShowMeYourRare
After almost 5 weeks in #NonConvulsiveStatus we are 5 days in to the #KetoDiet and someone's Sparkle is coming back. This is the first she's played with toys in well over a month
#Epilepsy #EpilepsyKeto #LGS #LennoxGastautSyndrome #InvDuDel8p #ShowMeYourRare #WonkyGenes #Seizure
#RareDiseaseDay may be over, but the conversation & passion doesn’t stop for us at @BedrockHealth
Visit https://t.co/lwiYjP7tJm to hear what patients & professionals think + learn more about #RareDiseaseInsights
Be part of the conversation.
#RareReality #ShowMeYourRare
Visit https://t.co/lwiYjP7tJm to hear what patients & professionals think + learn more about #RareDiseaseInsights & to be part of the conversation.
#RareDiseaseDay #ShowMeYourRare
Visit https://t.co/3kqGaYrPbR to hear what patients & professionals think + learn more about #RareDiseaseInsights
Be part of the conversation.
#RareReality #ShowMeYourRare #RareDiseaseDay
@pulseinfoframe @CureFA_org exciting times @GlobalGenes #RareDisease #Patient Advocacy Summit
all being #Ataxia aware (in Style)
#ShowMeYourRare
#ShowYouCare
#ShowUsHowRareYouAre
#ShowYourStripes
#RareDiseaseDay2021
Another brilliant entry for the #ShowMeYourRare challenge!
https://t.co/xPlCBvU3K1 #RareDiseaseDay2021 #RareDiseaseDay #RareReality
Have you tried out our #RareDiseaseDay2021 #Instagram #AR #filter yet? Head to our insta feed, look for the smiley face icon just under the #RareReach icon to have a go - make sure you tag us in the results :) #ShowMeYourRare #RareReality #RareDiseaseDay
#ShowMeYourRare - Show us you have a rare condition, without actually telling us you have a rare condition #RareDiseaseDay2021 #RareDiseaseDay #RareReality
https://t.co/cKMYW9NVWe
Great #ShowMeYourRare entry! Your turn next - tag us in your videos or photos that show us you have a #rare condition, without actually telling us you have a rare condition. #RareDiseaseDay2021 #RareDiseaseDay #RareReality https://t.co/zMYQGJpNg8
#ShowMeYourRare ;Low set posteriorly rotated ears, small lower jaw, down turned eyes, webbed neck, low hairline at nape of the neck, pulmonary valve and aortic valve stenosis, bicuspid, not tricuspid valve, 4ft9. Happy. Strong. Proud. @GeneticAll_UK @M4RareDiseases #DiagnoseMe
Our #NoonanHeroes have been posting their #RareReality as part of #RareDiseaseDay2021. Have you? Lets help each other increase our #RareReach by joining @RareDiseaseUK's campaign. Lets all join the #ShowMeYourRare campaign + show the world what a #NoonanHero looks like!
24 hours in to Keto and we have the most awake Hannah we've seen in over a month and finally got some sounds as well as some huge smiles. How awesome that it should be on #RareDiseaseDay #ShowMeYourRare #InvDuDel8p #WonkyGenes #1of80worldwide #Epilepsy #Keto
Take part in the #ShowMeYourRare challenge! Show us you have a #rare condition without actually telling us – post your videos/photos below 👇#RareDiseaseDay2021 #RareReality @camraredisease @Ataxia_and_Me @Patch1Purple @ITPSupportAssoc @proudcharlotte1 @HWTHEATHERS @LaraBloom
Visit https://t.co/lwiYjP7tJm to hear what patients & professionals think + learn more about #RareDiseaseInsights & to be part of the conversation.
#RareDisease #RareDiseaseDay2021 #RareReality #ShowMeYourRare
We're proud to support #RareDiseaseDay today. #Fragilexsyndrome is the most common known inherited cause of learning disabilities. @fragilexuk provides information & support
#RareReality
#RareReach2021
#ShowMeYourRare @GeneticAll_UK @rarediseaseuk
Sunday 28thFeb is @RareDiseaseUK 's #RareDiseaseDay2021an international awareness campaign showing the #RareReality for all #RareDisease. Let's do the #ShowMeYourRare challenge: use these hashtags + your photos +videos to show you have a rare condition, without saying what it is!
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