Klippel-Feil Syndrome Freedom

Conquer a rare skeletal disease. Congenital fusion of cervical spine. Organs, nerves, muscles. 🗝 Research | Educate | Empower | Advocate
#Genetic #Neuro #Pain

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

KFS? https://t.co/QeGcHG19Uo
Diagnosed? https://t.co/5iTRjNxppw
Pain Man https://t.co/kADluBN2H6
KFS tests/scans https://t.co/jqm2xZgPT3 &
https://t.co/H24UzLs4KI
Klippel-Feil Syndrome Freedom page https://t.co/z7eDEI4H82
#raredisease #spine #rare #research

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

It's #RareDiseaseDay
KFS? https://t.co/QeGcHG19Uo
Diagnosed? https://t.co/5iTRjNxppw
KFS tests/scans https://t.co/jqm2xZgPT3 &
https://t.co/H24UzLs4KI
Klippel-Feil Syndrome Freedom page https://t.co/z7eDEI4H82
#raredisease #spine #rare #research
@GlobalGenes @RareDiseases

[Amy Casey @hygienie1]

As a #RareDisease patient, do you worry about how you will make money to live when and if your disease progresses beyond what you have done your whole adult life?! I do! #RareDiseaseTruth

[Andra Stratton @livinlavidalopo]

There is a significant lack of attention to adults living w #RareDisease in media and, frankly, in the rare community. I was once a child with significant physical and emotional challenges. There might be some lessons to be learned from folks like me. #RareDiseaseTruth

[Stephanie Fischer @RarePOV]

Basket and umbrella #clinicaltrials: untapped opportunities in #raredisease https://t.co/Rs6zNODJUJ via @TrialsArena

[Sharon Rose Nissley @Rose_of_Sharon8]

Have Klippel-Feil syndrome?
In a KFS Freedom support group?
Participate in this vital new research!
Adult group: https://t.co/sTEsBkhOM9
Parents group: https://t.co/fR4naxJwl9
Enroll in the registry > https://t.co/9UAAMgHQJu
@KFS_Freedom - https://t.co/I8iFCaqe5u
#raredisease

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

KFS research opportunity for those diagnosed! Please participate!
More info in your groups below.
Adult Patient Group: https://t.co/tMXjHjWVmu
Parents Group: https://t.co/x2ydZ4rfvS
#raredisease #spine #diagnosis #progress
Or go to Klippel-Feil Syndrome Freedom on Facebook

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

KFS? https://t.co/QeGcHFJyvO
Diagnosed? https://t.co/5iTRjNfO0W
Pain Man https://t.co/kADluBvriw
KFS tests/scans https://t.co/jqm2xZyqKB &
https://t.co/H24UzLatm8
Klippel-Feil Syndrome Freedom page https://t.co/z7eDEImhZA
#raredisease

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

This is fabulous news! Congratulations to our partners! May this provide opportunity for Klippel-Feil syndrome and all #raredisease!

[ThinkGenetic, Inc. @ThinkGenetic]

ThinkGenetic was just named the co-champion of the #MITSolve - #Horizon Prize. Thank you to our supporters and team for helping to shorten the diagnostic odyssey for those with genetic conditions and believing in the mission. Onward! https://t.co/ZiSIMCB3cH #concordia2021

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

Thank you! @RarePOV

[Stephanie Fischer @RarePOV]

@KFS_Freedom @power4patients Great question! From @MPN_RF: Myeloproliferative neoplasms (#MPNs) are a closely related group of progressive blood cancers in which the bone marrow typically overproduces one of the mature blood elements. You can learn more at https://t.co/7AkzqAUbF0.

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

@RarePOV @power4patients Hi, What is an MPN?
#RareDisease Patients

[Sharon Rose Nissley @Rose_of_Sharon8]

Klippel-Feil Syndrome Awareness Day Timeline
2014 @GlobalGenes >https://t.co/tSjmbKCvPw
2015 @TheMightySite >https://t.co/TpKvk8mrPg
2017 @PatientWorthy >https://t.co/wQWyvqARv8
2018 @thinkgenetic >https://t.co/a27QSYVPfW
Annually @KFS_Freedom>https://t.co/2CdE8lxvov
#RareDisease

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

@ThinkGenetic AND more KFS info via @ThinkGenetic partnership #raredisease https://t.co/Q8ai2nJhFe

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

@ThinkGenetic Thank you! > https://t.co/Fop8YeBiZx

#raredisease KFS Awareness Day article via @ThinkGenetic

[ThinkGenetic, Inc. @ThinkGenetic]

Today is Klippel Feil Syndrome Awareness Day!

Join ThinkGenetic Advocacy Partner @KFS_Freedom in spreading the word and building up awareness of this rare genetic condition using #KFStrong

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

Celebrate yourselves today. Our community is fabulous! Share w others about you, your KFS story, your talents & photos. Share what KFS folks need for a full lifetime w/o rare skeletal disease challenges. #raredisease @GlobalGenes @SanfordCoRDS @ThinkGenetic @RareAdvocates @ORDR

[Kent Cook @The_KentC]

❤️ #kfstrong @KFS_Freedom ❤️

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

Tomorrow is KFS Awareness Day! >https://t.co/FaTGcnpalz
What is KFS? https://t.co/QeGcHG19Uo
Visit
Klippel-Feil Syndrome Freedom> https://t.co/z7eDEI4H82
#raredisease #aware #advocate #patient #parent #treatments #medical #genetic #data @GlobalGenes @PatientWorthy @SanfordCoRDS

[Klippel-Feil Syndrome Freedom @KFS_Freedom]

KFS Awareness Day! >https://t.co/FaTGcnpalz
KFS? https://t.co/QeGcHG19Uo
Diagnosed? https://t.co/5iTRjNxppw
Pain Man https://t.co/kADluBN2H6
KFS tests/scans https://t.co/jqm2xZgPT3 &
https://t.co/H24UzLs4KI
Klippel-Feil Syndrome Freedom page https://t.co/z7eDEI4H82
#raredisease

[CDC @CDCgov]

#DeltaVariant surging in U.S. New data show Delta much more contagious than previous versions of #COVID19. Unvaccinated people: get vaccinated & mask until you do. Everyone in areas of substantial/high transmission should wear a mask, even if vaccinated.
https://t.co/tt49zOEC8#DeltaVariant surging in U.S. New data show Delta much more contagious than previous versions of #COVID19. Unvaccinated people: get vaccinated & mask until you do. Everyone in areas of substantial/high transmission should wear a mask, even if vaccinated.
https://t.co/tt49zOEC8#DeltaVariant surging in U.S. New data show Delta much more contagious than previous versions of #COVID19. Unvaccinated people: get vaccinated & mask until you do. Everyone in areas of substantial/high transmission should wear a mask, even if vaccinated.
https://t.co/tt49zOEC8#DeltaVariant surging in U.S. New data show Delta much more contagious than previous versions of #COVID19. Unvaccinated people: get vaccinated & mask until you do. Everyone in areas of substantial/high transmission should wear a mask, even if vaccinated.
https://t.co/tt49zOEC8#DeltaVariant surging in U.S. New data show Delta much more contagious than previous versions of #COVID19. Unvaccinated people: get vaccinated & mask until you do. Everyone in areas of substantial/high transmission should wear a mask, even if vaccinated.
https://t.co/tt49zOEC8N