Закреплённый твит
KFS? tinyurl.com/mgrbc7x
Diagnosed? tinyurl.com/y8vkcwbd
Pain Man tinyurl.com/k2yq9qb
KFS tests/scans ow.ly/RBQUk &
ow.ly/RBQYH
Klippel-Feil Syndrome Freedom page tinyurl.com/ycapla4d
#raredisease #spine #rare #research
Dansk
Klippel-Feil Syndrome Freedom
7K posts
Klippel-Feil Syndrome Freedom
@KFS_Freedom
Conquer a rare skeletal disease. Congenital fusion of cervical spine. Organs, nerves, muscles. 🗝 Research | Educate | Empower | Advocate #Genetic #Neuro #Pain
Chicago, IL - Global outreach Присоединился Haziran 2012
2.7K Подписки1.8K Подписчики
It's #RareDiseaseDay
KFS? tinyurl.com/mgrbc7x
Diagnosed? tinyurl.com/y8vkcwbd
KFS tests/scans ow.ly/RBQUk &
ow.ly/RBQYH
Klippel-Feil Syndrome Freedom page tinyurl.com/ycapla4d
#raredisease #spine #rare #research
@GlobalGenes @RareDiseases
Français
Klippel-Feil Syndrome Freedom ретвитнул
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
English
Klippel-Feil Syndrome Freedom ретвитнул
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
English
Klippel-Feil Syndrome Freedom ретвитнул
Basket and umbrella #clinicaltrials: untapped opportunities in #raredisease clinicaltrialsarena.com/analysis/baske… via @TrialsArena
English
Klippel-Feil Syndrome Freedom ретвитнул
Have Klippel-Feil syndrome?
In a KFS Freedom support group?
Participate in this vital new research!
Adult group: tinyurl.com/wkkbwrwd
Parents group: tinyurl.com/27vzadcr
Enroll in the registry > tinyurl.com/y7fdemtb
@KFS_Freedom - facebook.com/KlippelFeilSyn…
#raredisease
English
KFS research opportunity for those diagnosed! Please participate!
More info in your groups below.
Adult Patient Group: facebook.com/groups/4062077…
Parents Group: facebook.com/groups/8962603…
#raredisease #spine #diagnosis #progress
Or go to Klippel-Feil Syndrome Freedom on Facebook
English
KFS? tinyurl.com/mgrbc7x
Diagnosed? tinyurl.com/y8vkcwbd
Pain Man tinyurl.com/k2yq9qb
KFS tests/scans ow.ly/RBQUk &
ow.ly/RBQYH
Klippel-Feil Syndrome Freedom page tinyurl.com/ycapla4d
#raredisease
Dansk
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! loom.ly/NdlYJk0 #concordia2021
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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 mpnresearchfoundation.org/understanding-….
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Registered & looking forward to learning more about treatment options for #MPNs in this free webinar hosted by @power4patients tomorrow at 1pm ET.
MPN Research Foundation@MPN_RF
Free registration is available for @power4patients' webinar tomorrow, 9/21, at 1pm ET on "Which MPN Treatment Is Right for You? What You Need to Know" with Dr. John Mascarenhas of @mountsinaiNYC. Learn more at buff.ly/3z4laCi. #BCAM #BloodCancerAwarenessMonth #mpnsm
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Klippel-Feil Syndrome Freedom ретвитнул
Klippel-Feil Syndrome Awareness Day Timeline
2014 @GlobalGenes >tinyurl.com/ny77d8p7
2015 @TheMightySite >tinyurl.com/y82fx4f4
2017 @PatientWorthy >tinyurl.com/9dwn6dr9
2018 @thinkgenetic >tinyurl.com/3787pabz
Annually @KFS_Freedom>tinyurl.com/y8392ges
#RareDisease
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@ThinkGenetic AND more KFS info via @ThinkGenetic partnership #raredisease thinkgenetic.com/diseases/klipp…
English
Klippel-Feil Syndrome Freedom ретвитнул
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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@ThinkGenetic Thank you! > news.thinkgenetic.com/2018/08/06/end…
#raredisease KFS Awareness Day article via @ThinkGenetic
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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
English
Klippel-Feil Syndrome Freedom ретвитнул
Tomorrow is KFS Awareness Day! >tinyurl.com/y8392ges
What is KFS? tinyurl.com/mgrbc7x
Visit
Klippel-Feil Syndrome Freedom> tinyurl.com/ycapla4d
#raredisease #aware #advocate #patient #parent #treatments #medical #genetic #data @GlobalGenes @PatientWorthy @SanfordCoRDS
English
KFS Awareness Day! >tinyurl.com/y8392ges
KFS? tinyurl.com/mgrbc7x
Diagnosed? tinyurl.com/y8vkcwbd
Pain Man tinyurl.com/k2yq9qb
KFS tests/scans ow.ly/RBQUk &
ow.ly/RBQYH
Klippel-Feil Syndrome Freedom page tinyurl.com/ycapla4d
#raredisease
English
Klippel-Feil Syndrome Freedom ретвитнул
#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.
cdc.gov/coronavirus
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