Top Tweets for #RareKids
Wisconsin advocate Abigail Rausch explains that the #PRV helps kids with #raredisease feel like they matter.
Tell Congress they MUST support #rarekids by renewing the program before it expires.
Take Action: https://t.co/ymMhG3Nkpg
#Cures4RareKids #Hyperoxaluria
#PRV isn’t hypothetical - it’s making a real difference in the lives of #rarekids TODAY. If we lose #PRV, we lose a vital incentive for #RareDisease treatment development.
Tell Congress to Act Now: https://t.co/ymMhG3Nkpg
#Cures4RareKids
This is a model pioneered by amazing #RareParents in the UK; who continues to inspire me day by day w/ the length they go to do best by their #RareKids. I am so proud to be involved with the network and directly with many member orgs @Ring20UK @CureDhdds @UKTSA @adamclat (2/4)
3 years ago this little lady was born oy to be diagnosed with a rare condition soon after. The importance of #earlydiagnosis and #earlyinterventions for kids cannot be underestimated to enable achieving their potential #accesstohealthcare without delay for #rarekids @rareireland
Daniel (8 yrs) got a little gift from the hospital for doing well on his blood work and he’s been having A LOT of fun with it! He made a little teaching video.
#rarekids #immunology #macrophageactivationsyndrome #autoinflammatoryadvocate
Our #CharityPartners @JordansGAngels have created a beautiful downloadle book for going back to school called Let's Be Friends. It's even got a workbook sections
#RAREKids #BackToSchool #RAREResources
https://t.co/ZjPVT2mAdz
"One day, maybe my son will be cured. I wonder if there is someone looking to help my son or the other children who suffer from a rare disease like him.” Find out how you can support #RareDiseaseDay2021 with Cassie+Friends: https://t.co/9nLrdOGB1C #RareKids #donate #advocate
To end the day with a large helping of positivity, a film showing our #UniqueFeet families staying connected during lockdown ❤️🦓
If you missed it, don’t worry! It's available for 30 days so you can pop back: https://t.co/9oTwMLvMa0
#UniqueFeetFriends #RareDisease #RareKids
So, apparently “cutting teeth” is a trigger for Art’s seizures. 🤦🏾♀️ #knowingishalfthebattle #epilepsy #rarekids
Thanks to a @GlobalGenes grant, @AverysHope1 is offering nonmedical #financialassistance ($200-$1000) to the families of #rarekids with #GIconditions impacted by #COVID19. Assistance is on a first come, first serve basis. Email [email protected] for more info #rareAdvocacy
@RareAdvocacy @Rose_of_Sharon8 @therarefair @MyCityMed The “other 50%” is our knowledge base for the #rarekids we’re raising!
Don’t miss the fantastic @Rose_of_Sharon8 as she moderates our #RareAdult chat at #therarefair this Friday!! #RareKids grow into adults and Sharon is such a champion for this population. Tickets at https://t.co/GtC8qA9His.
@emlord Speaks! Track Two: Leveraging Digital Tools for Reach and Impact https://t.co/D58RyYXABB I saw @RarePOV @taylorkane23 in photo with Cambria too! @MyCityMed @therarefair @GlobalGenes #2019GGSUMMIT #parents #sicks #kids #physicians #access #hospital #raredisease #tests
Despite limited joint flexibility, Vineeth loves to play football, cricket and basketball. If at all these #RareKids are given right diagnosis, early intervention and timely access to medication, these kids would be not just #Rare but #WonderKids too?!!! @curevineeth @Save_Arian
Happy to have seen his favourite animal "The White Horse". Nothing can dampen the spirit of these #Rarekids. #EndHunterSyndrome
#rare means different, and sometimes new,
but #rarekids are still a lot like you.
They love to laugh, & love to play, & just like you they need #kindness each day.
So #showyourstripes! And show that you #care,
With kindness and #love for rare kiddos everywhere.
#battenhope
Speaker Update: @ShiraStrongin, rare advocate, patient, founder of @TheSickChicks, student and actress (#sortasupportive) is joining us at #TheRareFair on September 28th! Don't miss her talk on "Transitional Care - The Shift After 18". #rarekids #rareadv… https://t.co/2hboYwHGso
Do you know about our #RareYouthProject? Did you know that we have a dedicated youth edition, written by children and young people for CYP? Please share this with your #RareKids https://t.co/Zcrv62SaFU #RareDisease #YoungVoices
#Hurray! Rare Kids kicking butt and riding bikes! Love it.
#beawareofrare #raremoms #rarekids https://t.co/2kwWDRfzE7
When the girl you thought may not survive to he 3yo is almost 4yo and riding a bike ❤❤❤
#TimothySyndrome #LongQT #ProudMama
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