CheckRare @CheckRare
Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion. checkrare.com New York Joined December 2016-
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Today is officially World #COL6Day! 🎉 Join us in celebrating the inaugural World Collagen 6 Day, dedicated to promoting global compassion, research, and care for those affected by COL6-related myopathies. Join the Virtual Congress: col6.world/applicationform #CheckRare #RareDisease #COL6Day #COL6Myopathy #RareGenetic #RareNeurology #RareMusculoskeletal
🎗️Join us at the @CureFestUSA for Childhood Cancer event, hosted by the Arms Wide Open Childhood Cancer Foundation this September 18-20 in Washington, DC! Featuring speeches, performances, games, activities, and a memorial shoe display, CureFest provides a platform to connect and foster collaboration with patients, families, caregivers, physicians, researchers, and elected representatives. Register at curefestusa.org #CureFest2026
💡Rare Disease Spotlight: Prader-Willi Syndrome Learn more about this rare disease with our Learning Center checkrare.com/prader-willi-s… #CheckRare #RareDisease #PraderWilli #RareGenetic
The #CheckRare team has been hard at work at #ASCO26 attending clinical data sessions. This was an exciting conference with a ton of presentations on the latest in #RareCancer!
Just one week until World Orphan Drug Congress USA 2026! Connect with leaders, regulators, and patient advocates to advance rare disease therapies, clinical trials, and patient access strategies from June 9–11 in Boston. Last chance to register at terrapinn.com/WODC/US/2026/C… #WODC #WorldOrphanDrugCongress #OrphanDrugs #RareDisease #PatientAdvocacy
Join us in celebrating CAH Awareness Month this June! CAH is a group of rare genetic conditions caused by lack of 21-hydroxylase enzyme needed in the adrenal glands, causing the body to not be able to produce adequate cortisol. Learn more about this rare disease and its diagnosis, management, and research advancements at checkrare.com/june-is-cah-aw… #CheckRare #CAHAwarenessMonth #CAH #CongenitalAdrenalHyperplasia #RareEndocrine
June 6th is the 2nd World Collagen 6 Myopathy Day! We’re shining a light on COL6, an ultra-rare, genetic 🧬, neuromuscular disorder, impacting the lives of thousands of individuals. Learn more about COL6 by visiting col6.world #CheckRare #RareDisease #COL6Day #COL6Myopathy #RareGenetic #RareNeurology #RareMusculoskeletal
Join the World Orphan Drug Congress USA 2026 from June 9-11 in Boston! Connect with leaders, regulators, and patient advocates to advance rare disease therapies, clinical trials, and patient access strategies. Register now at terrapinn.com/WODC/US/2026/C… #WODC #WorldOrphanDrugCongress #OrphanDrugs #RareDisease #PatientAdvocacy
Narcolepsy is caused by the loss of hypocretin-/orexin-producing neurons, a discovery made in 1999 thanks to Dr. Mignot’s research that led to advances in diagnosis and treatment. Although current pharmacotherapy is still largely focused on symptomatic treatment, investigational orexin-2 agonists may be the future of disease modifying treatments in narcolepsy. Learn more at checkrare.com/narcolepsy-bre… #CheckRare #Narcolepsy #RareNeurology #RareGenetic #RareDisease
Highlights from #AAN2026 are now live on our website! Learn about the latest research in rare neurology with leading physicians, advocates, and healthcare professionals. checkrare.com/diseases/neuro… #CheckRare #RareNeurologyDisorders #ClinicalTrials #PatientAdvocacy #RareDisease
Join the World Orphan Drug Congress USA 2026! Connect with leaders, regulators, and patient advocates to advance rare disease therapies, clinical trials, and patient access strategies from June 9–11 in Boston. Register now at terrapinn.com/WODC/US/2026/C… #WODC #WorldOrphanDrugCongress #OrphanDrugs #RareDisease #PatientAdvocacy
PLDG-1 is underdiagnosed, but with increasing awareness, and the availability of effective treatment, diagnosis and management of these patients can be improved today. Learn more at checkrare.com/diagnosis-and-… #CheckRare #PLGD #RareGenetic #RareDisease
Systemic mastocytosis is a rare and often “hidden” disease that can present with a wide range of symptoms. Because it can mimic other conditions, diagnosis is often delayed. This overview highlights the complexity of the disease, its impact across multiple organ systems, and the importance of greater clinical awareness to support earlier recognition and diagnosis. Learn more: checkrare.com/an-overview-of… #CheckRare #SystemicMastocytosis #RareAutoimmune #RareDisease
Trofinetide is now available in a new oral powder formulation for the treatment of patients with Rett syndrome. Learn how Daybue (trofinetide) Stix change disease management for patients at checkrare.com/daybue-trofine… #CheckRare #RettSyndrome #RettSyndromeTreatment #RareNeurology #RareGenetic
🔎New Learning Center- Neuroblastoma Learn more at checkrare.com/neuroblastoma/ #CheckRare #RareDisease #Neuroblastoma #RareNeurology #RareCancer
New data highlights the potential of repinatrabit as a promising oral therapy for phenylketonuria, with adolescents achieving significant and sustained reductions in blood phenylalanine levels. As a first-in-class approach targeting Phe transport, these findings reinforce its potential to expand treatment options as it advances into phase 3 trials. Learn more at checkrare.com/open-label-ext… #CheckRare #PKU #RareMetabolic #ClinicalTrials
Systemic mastocytosis can be easy to miss, presenting as anything from a simple rash to fatigue or even unexplained anaphylaxis. Elevated tryptase levels can signal a systemic cause, not just allergies. Learn how earlier diagnosis and a multidisciplinary approach are critical to improving patient outcomes at checkrare.com/beyond-the-ras… #CheckRare #SystemicMastocytosis #RareAutoimmune #RareDisease
Today is PLGD-1 Awareness Day. Learn more about this often misdiagnosed disease and its management at checkrare.com/plasminogen-de… #CheckRare #PLGD1 #PlasminogenDeficiency #RareGenetic #RareOphthalmology
CheckRare is on site at #ASPHO2026 learning about Immunotherapy Unleashed: CAR-T Innovations and Vaccine Combos Taking on Refractory Solid/CNS Tumors. Stay tuned for additional conference coverage.
The Arms Wide Open Childhood Cancer Foundation’s mission is to fund less toxic therapies for children with cancer to improve quality of life and to give children battling cancer and their families hope during the most difficult days of their lives. Learn more about this inspiring organization and their initiatives at checkrare.com/arms-wide-open… #CheckRare #ArmsWideOpen #ChildhoodCancer #RareCancer
Effie Parks @OnceUponAGene
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Cambridge Rare Diseas... @camraredisease
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dazzle4rare @dazzle4rare
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Muscular Dystrophy As... @MDAorg
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Marni Cartelli @Purrfectly_Rare
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claire18 @hasanyygit
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RyuStrong_DMD @RyuStrong_DMD
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Elena E @elifxxelifxx
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Wálé Akíntúndé �... @raikage_18
411 Followers 3K Following #Athleisure, #Science, #Business, #Futbol 🇾🇪, #Arts, and #Music Enthusiast. Follow Jésù Christi at Gal 5, Mark 12, 1 COR 13, 1 John 4, and James 4. ❤️💚🖤🌸💐
CMH @CAMILOMHO
62 Followers 759 Following
Dave Doherty @DDBall4life
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Rose M. @Rose_M031
0 Followers 15 Following
J @epilepsytime
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TUSC3 Rare @TUSC3CDG
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Rosa Sitjes 👩🏻�... @RSitjes
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Nathan Moerke @NMoerke
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Medspartner @medspartner
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Ayşegül Yıldırım @DiyalizTeknikSa
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Russell Lonser, M.D. @RussellLonser
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Mark K. Loechelt @MarkLoechelt
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E_M @8451elonn
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lrene @Keith_Garn5365
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Amanda Ricehouse @AmandaRicehouse
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Jody Rule @JodyRule2
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Share & Care for Rare... @Share_Care_Rare
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Juliana Conz 🇧🇷... @JulianaConz
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EURORDIS-Rare Disease... @eurordis
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Adam Feuerstein ✡�... @adamfeuerstein
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Irakli 🚀 @TheSpacerr
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Tim Walbert (HRZN Par... @HorizonCEOTW
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Karan Srisurapanont, ... @KSrisurapanont
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L Brielmaier @BrielmaierL
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Allyson M. W. Dyar @Allyson13
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Washington University... @WashURareCare
72 Followers 69 Following NORD Rare Disease Center of Excellence | We provide clinical diagnosis, care for those with rare diseases and are recognized as a leader in rare diseases.
UCDavis_Gene_Therapy @UCDavisGT
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Leslie Karras @LKarras
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SDinMD @StephDinDC
698 Followers 573 Following Comedy🎙Sports ⚽️ Music 🎵 Tweets are mine & mine only.
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Daiichi Sankyo US @DaiichiSankyoUS
4K Followers 382 Following We create life-changing solutions for patients. See our guidelines: https://t.co/A1iZajC0s5
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Gilead Sciences @GileadSciences
72K Followers 198 Following At Gilead, we set – and achieve – bold ambitions to create a healthier world for all people. Read more: https://t.co/TZWHS6iRTe
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663 Followers 141 Following Dedicated to developing life-changing medicines for patients and families living with challenging diseases
Cycle Pharmaceuticals @CyclePharma
303 Followers 195 Following Passionate about providing quality treatments & services. Everything we do is with patients & caregivers’ best interests at heart. Every single patient matters.
CSL @CSL
6K Followers 227 Following Since our start in 1916, we have been driven by our promise to identify, develop and deliver innovations so our patients can live life to the fullest.
CRISPR Therapeutics @CRISPRTX
24K Followers 0 Following
Congenica @Congenica
2K Followers 523 Following We are Congenica, driving #PrecisionMedicine by providing automated software and solutions for the analysis and interpretation of genomic data at scale.
ERN ReCONNET 🇪🇺 @ern_reconnet
3K Followers 865 Following 🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
ERN eUROGEN @ERN_eUROGEN
1K Followers 533 Following Improving diagnosis, treatment & care for rare uro-recto-genital diseases & complex conditions needing highly specialised surgery. Funded by the EU.
Cogent Biosciences @CogentBio
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Clene Nanomedicine @CleneNano
862 Followers 170 Following Clene is committed to revolutionizing the treatment for people living with neurodegenerative diseases to restore and protect neuronal health.
Centene @Centene
6K Followers 76 Following Transforming the health of the communities we serve, one person at a time.
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186 Followers 65 Following We are dedicated to developing monoclonal and bispecific antibodies that address devastating diseases for which available treatments are inadequate.
Castle Creek Bioscien... @CastleCreekBio
455 Followers 94 Following Dedicated to making life better for people living with genetic diseases.
Cartesian Therapeutic... @CartesianTX
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Caribou Biosciences @CaribouBio
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Capricor Therapeutics @Capricor
3K Followers 239 Following Capricor (NASDAQ: $CAPR) is a biotech company focused on the development of cell & exosome-based therapeutics for treatment and prevention of serious diseases.Trends for United States
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