Top Tweets for #ZebraStrutters
@Ataxia_and_Me @alanROYGBIV @FibroFlutters @FoGenomics @FLGenomics I'll be easy to spot - stripy shirts, & my zebra mascot #zoellazebra who likes to stomp her hooves for #rarediseaseawareness
I have a genetic connective tissue disorder
๐ฆ๐ฆ๐ฆ @FibroFlutters
#StrutYourStripes #ZebraStrutters #patientadvocacy #geneticdisorders #chronicillness
Time to choose!
Tell us in comments ๐
Help give our little strutter a name ๐ฆ๐ฆ๐ฆ
Anxious to get its hooves dirty & #raiseawareness
#ZebraStrutters #RareDisease #PatientAdvocacy #Dazzle4Rare #StrutYourStripes #EhlersDanlosSyndrome #ultrarare
#name #zebras
Day 7 #Dazzle4Rare
Thanks for all your suggestions for our new mascot. Names to choose from are on the poster, which would you pick?
#ZebraStrutters #RareDisease #ultrarare #TeamDazzle #zebra #patientadvocacy #StrutYourStripes
Our mascot will work hard to help advocate for #rarediseaseawareness #rarediseases
Especially #ehlersdanlossyndrome, #musculoskeletal related rare + #undetermined disorders.
#Dazzle4Rare #StrongerTogether #FibroFlutters #ZebraStrutters #patientadvocacy #strutyourstripes
It's day 5 of #Dazzle4Rare +all week we've been asking for name suggestions for our new #mascot for #ZebraStrutters a name.
Do you like one that has already been suggested... drop a note in comments.
#funfriday #Awareness #patientadvocacyorganisation #chronicillness #RareDisease
It's day 4 #Dazzle4Rare
Our little strutter mascot is keen to get its hooves dirty + wave the stripy flag ๐ฆ๐ฆ๐ฆ
Help give it a name
#ultrarare #RareDisease #patientadvocacy #ZebraStrutters #FibroFlutters #EhlersDanlosSyndrome #PigmentedVillonodularSynovitis #MSK #hypermobility
Good morning and welcome to day 1 of #Dazzle4Rare22
๐ฆ๐ฆ๐ฆ
In the name of also letting you have a little fun I'd like to introduce you #ZebraStrutters new mascot.
๐ฆ๐ฆ๐ฆ Time to give our mascot a name ๐ฆ๐ฆ๐ฆ
Please write your suggestion in comments
#justforfun #RareDisease
We are open to everyone #notjustpatients
#Caregivers, + #healthprofessionals are welcome too!
๐ตHelp us to make this #mentalhealth community work for you
๐ตLets get a #raredisease women's group going to help fill the current void.
#Dazzle4Rare #FibroFlutters #ZebraStrutters
@Ataxia_and_Me @dazzle4rare Thanks @Ataxia_and_Me
This little #Zebra Strutter needs a name so it can help advocate, raise awareness and campaign for #rarediseases including our friends with #ataxia.
#EhlersDanlosSyndrome #PigmentedVillonodularSynovitis
#ZebraStrutters #RareDisease #Advocacy #Dazzle4Rare
Good morning and welcome to day 1 of #Dazzle4Rare22
๐ฆ๐ฆ๐ฆ
In the name of also letting you have a little fun I'd like to introduce you #ZebraStrutters new mascot.
๐ฆ๐ฆ๐ฆ Time to give our mascot a name ๐ฆ๐ฆ๐ฆ
Please write your suggestion in comments
#justforfun #RareDisease
@sabkin12 @EMoriartyWade @BecauseIMatter @NeenaNizar @SaritaEdwards @Ataxia_and_Me @alanROYGBIV @malezebra20202 @unitedadvocacy @PIPManchester @thekattdazzle @aneinternationa
@camraredisease @rarepatientvoic @RareRevolutionM @RareBeacon #WeAreFamily #Dazzle4Rare #RareDisease #Advocacy
#StrutYourStripes #ZebraStrutters
#EhlersDanlosSyndrome Awareness during May
Check this post for where to find information and support.
#EDS #HypermobilitySpectrumDisorders #strutyourstripes #RareDisease
@FibroFlutters #ZebraStrutters supporting
@TheEDSociety @ehlersdanlosuk @HMSACharity
https://t.co/HwlkeqA8qg
It's official ๐ we're now incorporated as a private company! ๐
Redevelopment and rebranding underway at Flutters and Strutters.
#development #fibroflutters #zebrastrutters #chronicillness #raredisease #patients #startup #healthandwellness #advocacy https://t.co/ilCXhwvCyz
Elamipretide Gets Orphan Drug Status for #Friedreich #Ataxia
https://t.co/158EVMrSgn
(Thanks to our collegue at #ZebraStrutters @FibroFlutters, for the heads up
Hi everyone, Carole from @FibroFlutters / #ZebraStrutters - Flutters & Strutters - here in the UK
#LetsTalkRare
Flutters and Strutters
aka #FibroFlutters ๐ฆ & #zebrastrutters ๐ฆ
supporting #RareDiseaseDay
@malezebra20202 @RareBeacon Thank you David ๐ฆ๐ฆ๐ฆ
I'll be there when I can too! #RareShowcase22
#StrongerTogether #RareDisease #mentalhealth #strutyourstripes #ZebraStrutters
CC @Ataxia_and_Me
@scrufton73 @malezebra20202 @ParadigmGlobal @findacure_fdn @OccipitalHDavid Safe home
David I have the same mug, too But with Alan, on it ๐
#ZebraStrutters
Our founder got a surprise gift from @scrufton73 @FibroFlutters #ZebraStrutters
#RareDisease
#NotJustPatients
#EDS
#Ataxia
#StrongerTogether
#CoMorbidities
Huge thanks to @camraredisease for a fabulous #RAREsummit21 #virtualevent
Great sessions and discussions with fantastic speakers.
It was a pleasure to support and attend with #ZebraStrutters and #FibroFlutters
#RareDisease #patientadvocacy #rarediseaseawareness
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