8 Dec 2023
The Rare Dementia Support Impact Study are currently recruiting healthcare professionals who are familiar with the lived experience of people affected by PCA, PPA or bvFTD to complete a short online survey. Take part here: qualtrics.ucl.ac.uk/jfe/form…
@Raresupport
ALT Rare Dementia Support. Advice, Community, Learning. Text is in purple.
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9 May 2023
Project Sebastian will be at the Batten conference in July! Calling all Batten warriors!!#RareDisease #RareSupport #RareGroups #cureraredisease#BattenDisease #Cln8 #treatments #cures #supportgroups @GagavProject
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9 May 2023
ALL CAN PARTICIPATE! RUNNERS, WHELLCHAIRS, WALKERS, BLIND, AIDES! #RareDisease #RareSupport #RareGroups #RareRun #RareWarrior5X5 #cureraredisease #RaceForACure #RaceForSupportGroups #BattenDisease #Cln8 #YouCanDoIt #running #funraiser #supportgroups "@GagavProject
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9 May 2023
"Saturday may 20th in person and virtual! Sign up today!
#RareDisease #RareSupport #RareRun #RareWarrior5X5 #cureraredisease #RaceForACure #RaceForSupportGroups #BattenDisease #Cln8 #YouCanDoIt #running #funraiser #treatments #cures #supportgroups #may20th" @GagavProject
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9 May 2023
"Its time to connect! What are you waiting for?? @GagavProject
#RareDisease #TakeoverTuesday #RareSupport #RareGroups #BattenDisease #CLN8
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9 May 2023
"California recognizes Batten Disease on the first weekend in June! Thank you Senator Wilk! @GagavProject
#RareDisease #RareSupport #RareGroups #CureRareDisease #BattenDisease
#CLN8 #Treatments #Cures #SupportGroups #California
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9 May 2023
At Project Sebastian we have weekly support groups every week both in person and virtually, not just for those living with #BattenDisease but across the #RareDisease space! @GagavProject
#RareSupport #RareGroups #cureraredisease #Cln8 #YouCanDoIt #supportgroups
#TakeoverTuesday
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9 May 2023
"We are Project Sebastian. I am a rare dad just like you. You are not alone. We see you! lets connect and support eachother! #RareDisease #RareSupport #RareGroups #RareRun #cureraredisease
#BattenDisease #Cln8 #YouCanDoIt #TakeoverTuesday @GagavProject
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28 Apr 2023
I’m sorry but you and your circus clowns do this to me? Yeah also it was his idea to begin with. It’s ok to remove trash from quality work. Also good job for having your friend make a joke about wheelchairs. 🤡🤡🤡
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1,080
28 Apr 2023
People are allowed to remake shots they aren’t satisfied with and they don’t have to invite the same people.
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28 Apr 2023
Was never your shot to begin with! Stop lying and spreading false information around for clout.
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28 Apr 2023
Idc who wins this round of sotshot but this is just not right! I’m banned by both whisperdan and dubb3d for claims I steal shots with no evidence but then they do this… We took this photo Feb 9th btw @SeaOfThieves @Raresupport #SeaOfThieves #SoTShot
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8 Mar 2023
Today is a gentle reminder to love on the women in our lives (including ourselves)💚 It only takes a moment to tell someone they are appreciated.
#internationalwomensday23 #cystinosiswarriors #cystinosiscaregivers #raresupport
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And for all @RareRevolutionM @TeddingtonTrust @Raresupport @rarediseaseday @GlobalGenes @RareUniversity @XPFamilySupport @eurordis @M4RareDiseases @XPSupportUK
#XerodermaPigmentosum #XP #EnfermedadesRaras @aedv_es @AEDVAndalucia @pielsana_aedv
15 Aug 2021
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1 Mar 2021
This would be such a cool idea... Please look into it! Tobii Eye Tracking is insane, and brings so much to games!
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17 Apr 2020
Thanks for the RT @raresupport! We cover 1000s of conditions, incl rare diseases, & are always adding. Search for your specific condition to find experts, trials, latest advances at medifind.com or watch this video to see what we're all about: bit.ly/2wJWzI7
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16 Apr 2020
We just launched a platform that can help - we're trying to solve this exact problem! bit.ly/MF-urticaria (I'm one of the people behind MediFind & suffer from chronic urticaria, though not Schnitzlers, myself). I set the search to Toronto, which looks closest. Hope it helps!
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Thanks to Sandra Webb for her invaluable speaking that helped many Spanish #XP affected to see what association can do for all of us. @XPSupportUK @SJDbarcelona_es cc @aedv_es @RareRevolutionM
@TeddingtonTrust
@Raresupport
@XPFamilySupport
@FEDER_ONG
@eurordis #EncuentroXP
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