Klippel-Feil Syndrome Freedom
@KFS_Freedom
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Conquer a rare skeletal disease. Congenital fusion of cervical spine. Organs, nerves, muscles. 🗝 Research | Educate | Empower | Advocate #Genetic #Neuro #Pain
Chicago, IL - Global outreach
Joined June 2012
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
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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
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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
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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
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Basket and umbrella #clinicaltrials: untapped opportunities in #raredisease
https://t.co/Rs6zNODJUJ via @TrialsArena
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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
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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
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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
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This is fabulous news! Congratulations to our partners! May this provide opportunity for Klippel-Feil syndrome and all #raredisease!
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
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Thank you! @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.
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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
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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
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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
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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
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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
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#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
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“Increasing the number of enrollment sites has been done and hasn't worked. Relying on digital advertising and community partnerships has had limited success. It's time to recognize that other issues are at play, and one of them is the cost of participating.” #clinicaltrials
Clinical trials need more Black and Latino people. Everyone should get paid to participate. #clinicaltrials #diversity
https://t.co/V7w3V3hXBt via @usatoday
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"For people who are living with rare diseases, this is not going to limit us if we think big!" @amyklobuchar - Rare Disease Congressional Caucus Briefing #RareDC2021
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If you don’t already follow @bsw5020 and support @iamalsorg (with a donation, retweets, etc.) please consider it. There is no doubt they are making a difference (and that difference is desperately needed).
Brian Wallach has beaten the odds. Four years ago, he was diagnosed with ALS – amyotrophic lateral sclerosis – and given six months to live Lee Cowan talks with Wallach and his wife, Sandra Abrevaya, about their unceasing efforts to expand treatments for ALS patients
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