Top Tweets for #RareNotLess
@VanScad @docsaw thank you for inviting FMDSA and the SCAD groups to participate and share their knowledge and resources with patients. #PatientSupport #Hope #Awareness #RareNotLess
Who’s ready for rare disease day? Raising awareness of #FibromuscularDysplasia and #medianarcuateligament lucky me I have both! #rarediseaseday2023 #awareness #rarenotless
@ColemanDM_vasc @PCORI @TaubmanInstitut @drjosflynn @SanthiKGanesh This symposium was nothing short of amazing! It was educational, motivating and inspiring. Thank you! #Hope #RareNotLess #Research #Goals
As a patient myself I am humbled to see so much support for this event. You are all truly making a difference in peoples lives. Thank you! #FMD #Support #RareNotless
One week until game day! The ESM Foundation can’t wait for clients, family and friends to join us at @ParkHyattAviara supporting two amazing charities @FMDartery and @srfcure. Big thank you to some of our sponsors: @Lexus @WilsonGolf @Gripsonthegoo @PayneMason.
Excited for the Living Rare Living Stronger Forum to begin. Starting the morning off with great music!#LivingRareForum #RareNotLess #Cleveland
This is amazing! Monica, you put Syngap1 on the map and now people like @jill_silverman_ have the funding to figure this out. This is such important work! There is #Hope for your son and all affected. #RareNotLess
We are excited to share one of two 2021 #RareDiseaseDayCards thank you Kaylie Harden for supporting the rare disease community again this year with your Rare Disease Day Cards #RareNotLess #RareDiseaseDay2021 @RareDiseases @rarediseaseuk @RareAdvocates @eurordis @RareRevolutionM
Given the likelihood of rationing of life-saving care in the near future, I hope people are dusting off the #rarenotless hashtag.
After a full week of advocating, its time for a mini vacation. Be proud of your efforts, you’re making a huge difference! One that will have an impact for generations to come. #RareNotLess #RareDiseases
Hope is in Washington DC for #RareDiseaseWeek #RareNotLess @RareAdvocates @RareDiseases @RareNewEngland @GlobalGenes
#RareNotLess 1st ever Rare Disease Day Card
#MedicareForAll is a disaster. Patients/Constituents want & deserve choices for coverage
@DonnaShalala @RepStephMurphy, which is esp critical for #raredisease populations, gov't continually fails us! #rareNOTless https://t.co/SAwH7gZmsS
@chipgaines @AssistingChip Let’s fund research. Check out https://t.co/ytqLyD4bu4 90% of patients are women #FMD can lead to stroke, dissection (tear of an artery) heart attack #RareNotLess
How do we as rare disease advocates keep going on with limited funds and resources??? Im tired of working so hard, it’s been 19 years since my diagnosis and 81 years since the first person was diagnosed #SucksLivingWithaRareDisease #RareDisease #RareNotLess
David is amazing. I needed a champion like this when I was diagnosed with #FMD almost two decades ago but there was no one. My #nursing and fear drove me to make a difference for our patient community. #RareNotLess #Hope #RareAsOne #Stroke #Aneurysms #Dissections
After almost losing his life to a #RareDisease, Dr. @davidfajgenbaum co-founded @CureCastleman to help patients, physicians and researchers work together to drive progress against Castleman disease. What’s your #RareAsOne story?
@nguyenbryan2016 Hi! you can read it here: Thread by @RareCandace: "September is awareness month. This disease has completely transformed my life. I was 27 when I was diagnosed, and I […]" #ITP #rareNOTless https://t.co/IXfYk8bxkt
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@EstherSHKimMD congratulations on a very successful SCAD Patient Symposium! Great topics and fantastic speakers. Loved the patients stories. Thank you! #SCAD #FMD #Hope #RareNotLess
Headed to Houston and can’t wait to see my rare friends. Honored to be speaking at this event. #rarenotless #FMD #LivingRareLivingStronger
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