Top Tweets for #CheckRare
💡Rare Disease Spotlight: Prader-Willi Syndrome
Learn more about this rare disease with our Learning Center https://t.co/j7jLaa8Xit
#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!
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 https://t.co/2cjjWviKYO
#CheckRare #RareDisease #COL6Day #COL6Myopathy #RareGenetic #RareNeurology #RareMusculoskeletal
Highlights from #AAN2026 are now live on our website! Learn about the latest research in rare neurology with leading physicians, advocates, and healthcare professionals.
https://t.co/74QF8bulOP
#CheckRare #RareNeurologyDisorders #ClinicalTrials #PatientAdvocacy #RareDisease
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 https://t.co/w4RzsHQSzl
#CheckRare #PLGD #RareGenetic #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 https://t.co/EKJINEdAyl
#CheckRare #RettSyndrome #RettSyndromeTreatment #RareNeurology #RareGenetic
🔎New Learning Center- Neuroblastoma
Learn more at https://t.co/EuxolpDqV7
#CheckRare #RareDisease #Neuroblastoma #RareNeurology #RareCancer
Today is PLGD-1 Awareness Day.
Learn more about this often misdiagnosed disease and its management at https://t.co/z5CAPFZwKB
#CheckRare #PLGD1 #PlasminogenDeficiency #RareGenetic #RareOphthalmology
There is a new wave of innovation at the intersection of artificial intelligence (AI) and rare disease care.
Learn more at https://t.co/oIjRT12aZz
#CheckRare #AI #RarDisease #RareDiseaseManagement
CheckRare is on site interviewing at #AANAM. Stay tuned for conference coverage, including an interview with Sumaira Ahmed of Sumaira Foundation on their new study comparing rituximab to approved drugs for NMOSD.
#CheckRare #NMOSD #RareNeurology
🔎New Learning Center- Narcolepsy: Recognizing the Signals, Reducing Diagnostic Delay, and Improving Patient Outcomes
Learn more at https://t.co/DAN6uBfR3h
#CheckRare #RareDisease #Narcolepsy #RareNeurology
Prader-Willi syndrome presents with distinct but often underrecognized features. Early recognition is key to reducing diagnostic delays and improving management strategies.
Learn more at https://t.co/SiiIkpjz8B
#CheckRare #PraderWilliSyndrome #PraderWilli #RareEndocrine #RareGastrointestinal #RareGenetic #RareNeurology #RareDisease
Updates regarding the phase 2 PIONEER study testing avapritinib (Ayvakit) in patients with systemic mastocytosis were presented at the 2026 AAAAI meeting.
Learn more about results and next steps at
https://t.co/CZ7vS9gxAE
#CheckRare #SystemicMastocytosis #RareAutoimmune #RareDisease
❗Tomorrow, April 7th at 1:00pm EST.
Last chance to sign up for our Live CME Webinar on Lysosomal Disorders and the Heart with Ozlem Goker-Alpan, MD, and John Jefferies, MD.
Click the link to register:
https://t.co/rkSkx29GqJ
#CheckRare #LiveCME #RareDisease #LDRTC
PLGD-1 is caused by defects in the PLG gene and is characterized by the body’s inability to produce adequate quantities of plasminogen.
Dr. Amy Shapiro provides an overview of this rare genetic condition at
https://t.co/wsF2eTIRWG
#CheckRare #PLGD1 #RareGenetic #RareDisease
=📢 March 2026 FDA Milestones in Rare Disease Care!
A busy month for FDA approvals in a variety of rare diseases.
Stay up to date with our 2026 PDUFA Dates and FDA Approvals page at https://t.co/dKzcblxrPt
#RareDisease #FDAApproval #MedicalBreakthroughs #CheckRare
Options for Fabry treatment have expanded. This Fabry Disease Awareness Month learn about Elfabrio, a PEGylated enzyme replacement therapy.
https://t.co/K9HRkhTuqs
#FabryDiseaseAwarenessMonth #RareDisease #FabryDisease #CheckRare
📢 One week until our Live CME Webinar on Lysosomal Disorders and the Heart with Ozlem Goker-Alpan, MD, and John Jefferies, MD.
April 7th at 1:00pm EST
Click the link to sign up:
https://t.co/rkSkx29GqJ
#CheckRare #LiveCME #RareDisease #LDRTC
Conference coverage from MDA 2026 addresses key data updates, therapeutic strategies, and evolving standards of care in spinal muscular atrophy.
View interviews with key opinion leaders at https://t.co/iJXwSRPucf
#CheckRare #MDA2026 #SMA #SpinalMuscularAtrophy #RareDisease
Explore expert perspectives on diagnostic challenges and management strategies in lysosomal storage disorders, with case highlights from Fabry disease and alpha-mannosidosis.
https://t.co/eu3up2sqEM
#RareLysosomal #LSD #CheckRare #Fabry #AlphaMannosidosis
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