Top Tweets for #ThinkRare
Late Swift over the garden just now, unfortunately it has disappeared by the time I got out there with a camera #thinkrare
Today is #RareDiseaseDay2025: over 300M people on 🗺️ live with a #RareDisease, about 1 in 12 here in 🇨🇦.
AI shows great promise in the patient journey to diagnosis, drug development, pharmacovigilance etc.
#FiightForOurLives #ThinkRare
@RareDiseases
@raredisorders
@rarediseaseday
@rarediseasefdn
@CHEO
@CanadianRDN
https://t.co/m14TK9NjCx

"The Rare Care Centre, launched in Feb 2022 at @Perthchildrenshospital, is changing lives for kids & families with rare & undiagnosed diseases. Learn more about our work in awareness, advocacy & more: https://t.co/vHyUrgpYDQ
#raredisease #rarecarecentre #thinkrare "

#Rarediseaseday2025 💜
🏃una maratona di 3 giorni (6-8 febbraio), organizzata dal Centro Coordinamento #MalattieRare @Reg_Campania, dedicata alle #sfide di pazienti, medici, operatori🧑🦰🧑⚕️
🗣️Oggi, sul tema della #formazione: Paola Torreri del @cnmr_ISS
🔎
https://t.co/xOqWmkOLsh

Thank you to @JimShannonMP for highlighting the challenges faced by the millions of people in the UK living with rare condition - many of which are preventable or able to be alleviated with HCP awareness #ThinkRare #RareDisease
Ascolta l'intervento del Prof @glimongelli @unicampania al nostro Convegno "Scompenso Cardiaco la nuova epidemia" @SenatoStampa 05/11/2024
Grazie al patrocinio non condizionante @FarmindustriaTW
Grazie al contributo non condizionante @merckgroup #Recordati
https://t.co/J8lidXPxwm
Wow! Look at this feedback about M4RD's 'Rare Disease 101' training which you can access online for free at https://t.co/FCNtsaNbND
#HumbleBrag #ThinkRare

Tonight we have 30 new M4RD Ambassadors starting their first year on the programme with an Induction Evening! Check out our socials and website to meet them! #RareDisease #ThinkRare #M4RDAmbassador

📛CHA2D2-VA not to be used in #AFib patients with #HCM o #amyloidosis📛
👉🏼 ALWAYS ANTICOAGULATE‼️
@ERNGuardHeart @GlobalHeartHub #cardiomyopathies #thinkrare
Happy to announce the ELPIS project, expanding our efforts to validate plasma biomarkers for CDKL5 Deficiency Disorder (CDD). Thanks to the LOULOU FOUNDATION’s $580K award, we will explore more biomarkers and extend our research to Europe & South America. #ELPIS #CDKL5 #ThinkRare
Trinity spin-out @UlyssesNeuro is bringing hope to patients of a rare genetic condition: #CDKL5 deficiency disorder (#CDD) through ELPIS, a project funded by the #LouLouFoundation. CDD primarily affects neurological development from early childhood.
More: https://t.co/vUGM3UP8u7

Have you been listening to the Footprints series?
When might liver disease have a metabolic cause? Find out more:
Apple: https://t.co/jWbjJDISTM
Spotify: https://t.co/dcVWgik8tQ
Or wherever you like to listen.
#gastrotwitter #IMD #raredisease #liverdisease #thinkrare
Accelerating LSD diagnosis in India. Great to hear of improved access to diagnostics, important to ensure people think to send the test.
#thinkrare
From deep inside the #FRIGE skunkworks, we present to you indigenously developed, affordable and high throughput #genetic assay for diagnosis of 29 common #lysosomalstoragedisorders.
Proudly designed, engineered, validated and deployed in #India!
#mastermalattierare @unicampania: how to move from national to regional rare disease plans? How to define clinical pathways for different rare disease? How to improve healthcare in the main and territorial hospitals, facilitating their connection? A great discussion! #ThinkRare

Yesterday in #Naples for #mastermalattierare at @unicampania
➡️deep dive into #PNRR #genetics #network for #RareDiseases
🧬📖🤓
➡️ but also quick stop for #sfogliatella 🥐🥧🧁😋
@glimongelli superb Host&Master 👨🏻🏫
@uniamofimronlus @Telethonitalia @OssMalattieRare

Great initiative, well done @rachsail @rare_trial @sujas15 @RAiNAllIreland @RareDiseasesIE and everyone involved #ThinkRare
"Exciting news! RAIN (All Ireland Rare Disease Research Network) is thrilled to collaborate with Rare Disease Research Catalyst Consortium (RDCat) to propel rare disease research forward in Ireland and strengthen collaboration across Europe. Together, we can make a difference! 🌟
🎉 Exciting News!
🧠 Ulysses Neuroscience's new biomarker lab at Pioneer Group Cherrywood Campus is fully operational! Need cutting-edge #biomarker analysis?
From #preclinical to #clinical, our experts drive breakthroughs. Contact us to learn more! 🔬💼
#cro #ThinkRare
📚Euriclea (Terra d’Ulivi edizioni, 2024)
🗓️ 30 maggio a Roma, 17.30, Caffè letterario.
Serata speciale con Fabio Luppi e @EnricoTerrinoni. Raccolta fondi per @ITA_CDKL5_IVLC. Presto countdown con video, versi, illustrazioni e musica. #Euriclea #ViaggioPoetico #CDKL5 #ThinkRare


We are proud to share this short film by student Samuel Morrison, who lives with EPP, highlighting the importance of raising awareness of #RareDisease: https://t.co/F6MIYikGHk
Thank you for sharing your story Samuel!
#CareForRare #ThinkRare #ThinkPorphyria #RareDiseaseDay
Healthcare professional? There are lots of ways to discover more about #RareConditions and find out how you can support diagnosis, treatment and services for patients #ThinkRare #RareDiseaseDay2024

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