Top Tweets for #RareIsNotRare
Every single one of us carries a unique genetic code. But when a mutation leads to disease, it's labeled rare. The truth? Rare is not rare.
#RareIsNotRare #GeneticAwareness #RareDiseaseAwareness
But wait, thereโs more: Jack started med school today! ๐ So hereโs a physician in training whose โwhyโ is rooted in his dedication to #raredisease advocacy ๐ฆ
THANK YOU Jack! Emmett and I are excited for your future ๐ซถ #rareisnotrare
Today was a great day! I met @stacy_hurt and talked about rare disease advocacy @PittTweet. Then in the afternoon I met with @SenBobCaseyโs team through @EveryLifeOrg to talk about some of my rare disease work and research funding for rare disease therapies. #rareacrossamerica
It's #RareDiseaseDay - we'd like to help remind everyone that #RareisnotRare - One out of every 10 Americans is living with a rare disease. Worldwide, there are more than 300 million people with rare diseases. Learn more @rarediseaseday @RareDiseases https://t.co/0YCF2WCEng
More than 300 million people globally and 1 out of 10 Americans live with a rare disease.
#RareIsNotRare
#RareDiseaseDay
There are about 7,000 #RareDiseases that impact 25 to 30 #million Americans. That equates to 1 in 10 Americans have a rare diseases. #RareIsNotRare
#raiseatoastie with Rueben & Aine on February 26th to raise awareness of rare disease #rarediseaseday2023 #raiseawareness #StrongerTogether #RareIsNotRare @RareDiseasesIE
@Horlickstothat It's scary enough to get a #RareDisease diagnosis, it's scarier when HCW's have little or no knowledge of what a rare disease even is. 10,000+ RDs? Collectively
#RareIsNotRare
It's a particular reason why parents become experts - we have to!
Itโs #FabryAwarenessMonth through April. #Fabry is a #rare #lysosomalstorage disease. Like most rare diseases it can affect not just your physical health, but also your #mentalhealth. #FAM #coulditbefabry #rareisnotrare
Iโm from Pennsylvania, USA. Where are all my fellow #RareDisease warriors located?
#RareisnotRare #RareisEverywhere
#FabryDisease #EhlersDanlosSyndrome
22q11.2 deletion syndrome- the most 'common' of #RareDiseases and one of several individually rare collectively common genetic conditions.
#RareIsNotRare and the 'common' needs are the same. #IntegratedCare
@FitzgeraldFrncs @sheehangilroy @sujas15 @rareireland
Down Syndrome Bill measures also needed for the myriad other genetic disorders the mapping of human genome reveals eg 22q: possibly half as common as Down's so not incredibly rare black swan event in population, but can be so for those coping with effects
https://t.co/ZuNEMLR3EC
Why indeed? is it to do with the 'rare' tag?
Individually rare, collectively common.
#RareIsNotRare
I came across this post from Lisa (Crawford) Foster
CEO Rare Disorders NZ - Can anyone answer these questions? "Why are people with rare disorders or #RareDisease are not recognised as a population when it affects 1 in 17? @22Q11_Ireland @PKU_Ireland @NI_RDP @SCTIreland
Happy #rarediseaseday!! Here is an article featuring our Director of Development and Programs, Brooke Thomas. Read at https://t.co/u9yBSwmAyS to learn more about Brooke's journey with #hurlersyndrome and be inspired to share your own story! #alrarediseaseday #rareisnotrare
What a familiar story Individually! Individually rare collectively common. 6,000 + rare disease conditions & an estimated 300,000 people in Ireland affected.
#RareIsNotRare
https://t.co/wXdtXt7gxf
#NewBornScreening expansion aside from saving a child's life every week would also save a 'diagnostic odyssey' journey for many families who have children affected by rare diseases in Ireland. With 6,000+rare diseases affecting approx 300,000 here #RareIsNotRare @DonnellyStephen
So.. I said expanding our #newbornscreening program will save an Irish childโs life every week and @DonnellyStephen said.... during senate debate last night๐. @RareDiseasesIE @IPPOSI
There are more than 6000 rare diseases. On the whole, rare diseases may affect 30 million European Union citizens.
Individually rare collectively common.
#RareDiseases #RareIsNotRare
We've reached 25,000 followers on Twitter! ๐
Thank you for supporting the rare disease community!
We are very excited to see new options for LGS and Dravet families coming down the pipeline. Seizures continue to run rampant in children and adults with LGS and we are desperate for more options. Thank you! @curedravet #CureLGS #RareIsNotRare #RareAsOne #DEE
As part of our ongoing collaboration with @TakedaPharma, we are pleased to share results from the Phase 2 ELEKTRA trial in children w/ #DravetSyndrome and #LennoxGastaut syndrome. Read more: https://t.co/LeBxuw9EkG
Individually rare collectively common #rareisnotrare
The Patient journey infographic is now available in French ๐ซ๐ท, German ๐ฉ๐ช, Turkish ๐น๐ท, and Dutch ๐ณ๐ฑ here ๐https://t.co/mi6yVCFMKS
Share with your communities! If you'd like to help us with translation into other languages please contact [email protected]
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