Top Tweets for #RareButNotInvisible
Families from across the country came together with one thing in common: love that refuses to let Niemann-Pick disease define them. Today, our 2026 awareness campaign begins. Together, we are visible. 💙 #BehindEveryPair #WeAreVisible #NNPDF #RareButNotInvisible
Rare disease are not rare for the families living with them.
African patients deserve timely diagnosis continuity of care, and inclusion in policy.
#RareDiseaseDay
#RareButNotInvisible #Africa
#AutoimmuneAfrica #AFLAR
@MatjasDW and myself preparing our talks for @EpiCARE_ERN meeting starting tomorrow! Stay tuned we have a lot of new information in GABAAR and precision medicine @Filadelfia_DK @FiladelfiaGene1 #StrongerTogether #EpilepsyAwareness #rarebutnotinvisible 🧠🧬
If you have #superiormesentericarterysyndrome #sindromedewilkie join us to the annual #smas patient assistance video to create and spread #Awareness
#raredisease #rarebutnotinvisible
Beautiful display on the #mairieparis13 raising awareness of rare diseases. @rarediseaseday #rarebutnotinvisible
Please Educate yourself about #RenalMedullaryCarcinoma (#RMC)! Read the Tweet below from Cora Connor at @RMCAwareness & learn more at the 🔗.
https://t.co/1w3HuM7ier
#ENDRMC
#SickleCell
#RareDisease
#KidneyCancer
#KnowYourStatus
#RareButNOTInvisible
#KidneyCancerAwarenessmonth
Renal medullary carcinoma is a #RareKidneyCancer associated with sickle cell trait, that affects young individuals. Today is #RareDiseaseDay and I’m sure many of you like us, never heard of RMC until a friend or loved one was diagnosed. #EndRMC #RareButNotInvisible
My heart is filled with sadness over the loss of Armia. The world is now undoubtedly without one of its brightest lights. Her life held so much promise. We must do more for those diagnosed with #RenalMedullaryCarcinoma #HealthDisparity #RareButNotInvisible
Great, informative video about #RenalMedullaryCarcinoma! Thx 4 sharing this @RMCAwareness & @chubbyemu 4 putting this 2gether & those involved in Advocating 4 #RMC. Herman's story continues 2 educate us All & teach new people about #RMC
#RMC
#SickleCellTrait
#RareButNotInvisible
Thank you @chubbyemu for your time & dedication in putting together Herman’s story! We are thankful for Dr. Tannir & @MDAndersonNews for taking charge of his care. @DHealthhub @power4patients @PavlosMsaouel @chubbyemu @Memej99 @KimrynRathmell @apolo_andrea @AndyHongMD
I continue to stress how important it is to learn about #RMC! It's a #rare form of #kidneycancer affecting those w/#SickleCellTrait and in some cases, #SickleCellDisease. Know Your Status, #GetScreened & Stay In The Know!
#ENDRMC
#SeeRMC
#InvisibleNoMore
#RareButNOTInvisible
Please follow @RMCAwareness and visit https://t.co/bRd2daYKnd
to learn much more about #RenalMedullaryCarcinoma, the link between #RMC and #SCT/#SCD and the campaign to make #RMC #InvisibleNoMore.
#SeeRMC
#ENDRMC
#InvisibleNoMore
#RareButNOTInvisible
Please READ! It's IMPORTANT that those of us w/#SickleCellTrait, #SickleCellDisease who are of African descent are at risk for #RenalMedullaryCarcinoma, or #RMC. Please LEARN about #RMC. Know Your Status, Get SCREENED, Stay In The Know.
#SeeRMC
#ENDRMC
#RareButNOTInvisible
Did you know if you have the sickle cell trait your at risk for a specific kidney cancer? ---> http://t.co/7U2aWdNZJw
#RMC patient Armia Austin was diagnosed at age 21. Watch as she shares details about her diagnosis and treatment journey, advice to others for sickle cell trait testing, and hopes and goals for the future. https://t.co/JhQ1DydqGp
#RMC #ENDRMC #InvisibleNoMore #RareButNOTInvisible
Network Manager, Cora Connor, shares her story and what led her to start RMC Support to raise awareness for people diagnosed with #RMC. https://t.co/VD9x1d6dJv #RareButNotInvisible #ENDRMC
Friday, April 16th, 10PM PT/1PM ET, Join the #patientchat with RMC Network Manager, Cora,
"Rare But Not Invisible, Finding Your Community". Details below!
@RMCAwareness
#patientchat
#RMCAwareness
#EmpoweredPatient
#RareButNOTInvisible
Join us for an Empowered #patient "Rare but Not Invisible: Finding Your Community" with our RMC Network Manager Cora, @RMCAwareness on Friday 04/16 10 AM PT | 1 PM ET https://t.co/wW0HLx7WjE
There is little to NO #RMCAwareness in our #Blackcommunity, yet 1 in 13 Black Americans carry the #sicklecelltrait & are @ risk for #renalmedullarycarcinoma. PLEASE, Educate yourself & others about #RMC & #KnowYourStatus!!
#SeeRMC
#ENDRMC
#InvisibleNoMore
#RareButNOTInvisible
PLEASE take the time to learn about #RMC & Know Your Status. These #RMC tweets deserve More attention. #RMC is an aggressive rare form of #kidneycancer. If you have #SickleCellTrait or #SickleCellDisease, you're at risk.
#SeeRMC
#ENDRMC
#InvisibleNoMore
#RareButNOTInvisible
3 days to go ! Good luck Ellis !! Raising awareness @PavlosMsaouel @kidneycanceruk @THEJamesWhale @CharlesSwanton @anthonyjoshua @SugarRayLeonard @ACANU_Geneva @MENnewsdesk @SaddIndependent @TheOldhamTimes @GranadaReports @itvnews @kidneycancers @DavidMay04
Who does Renal Medullary Carcinoma have to effect for there to be any viable funding and research?
#InvisibleNoMore
#ENDRMC
#SeeRMC
#RareButNOTInvisible
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