RASopathies Network

A 501c3 organization; Our mission is to advance research of the #RASopathies by bringing stakeholders together. #rarediseases @rasnet.bsky.social

[RASopathies Network @RASopathiesnet]

Newly diagnosed with a #RASopathy syndrome? (#Noonan, #Costello, #Cardiofaciocutaneous, #Neurofibromatosis 1, #Legius, and others) ⬇️Here's a helpful whiteboard video to explain more https://t.co/BsU1G2VLwJ

[Rare Disease Day @rarediseaseday]

💜🌍 Today is Rare Disease Day! 🌍💜

Together, we stand with the 300 million people worldwide living with rare diseases. In uniting on this day we can raise awareness, advocate for change, and promote a more equitable future! ⚖️

Learn more: https://t.co/AUKfGZJLJB

[Rare Epilepsy Network @RareEpilepsy]

Check out our upcoming event, Growing Together: Navigating the Life Stage Checklist for Families. https://t.co/QKgmdDAFzf

[RASopathies Network @RASopathiesnet]

Please find and follow us over on this site
@rasnet.bsky.social

[Helen Branswell 🇨🇦 @HelenBranswell]

Is the communications pause that's been imposed on the US government's health agencies affecting you? @statnews would love to hear about it. Please let us know. https://t.co/IlgpJwHkJ8

[CDC Flu @CDCFlu]

A new CDC study looking at more than 15,000 children over a 5-year period found that flu vaccination reduced the risk of flu-associated emergency department visits or hospitalization for children by about half. Read the full study here: https://t.co/JkV39qlEKk

[RASopathies Network @RASopathiesnet]

#MEK inhibitor!

[BowTiedBiotech 🧪🔬🧬 @BowTiedBiotech]

10 𝗙𝗶𝗿𝘀𝘁-𝗶𝗻-𝗖𝗹𝗮𝘀𝘀 Drugs on Track for FDA Approval in 2025

$IONS $SNY https://t.co/nEuu5tYcPZ $RGNX $VRTX $ABBV $SWTX $ARWR $URGN $RARE

Source: Maryam Daneshpour on the HR app!

[RASopathies Network @RASopathiesnet]

@RASopathiesnet followers might be interested in this!
@mcmdotnet
#RASopathies #CMAVM

[Miikka. Vikkula @MiikkaVikkula]

The exciting, complete VAC 2025 program is now online! https://t.co/tPDT6dWGPk
Don't wait to register! https://t.co/hJEp53G8WX

@vascern @hevas_nl @VASCAPA @CMTCOVM @ISSVA_org @PTENFoundation @LGDA_EU @LGDAlliance @AtavistikBio @PalvellaTX

[Children's Tumor Fdn @ChildrensTumor]

👋NF Clinicians & Healthcare Providers! The 2025 NF Virtual Case Conference kicks off Jan 16! Join the first session: Complex NF1 🕔5–6 PM ET. Led by top NF clinicians, this Zoom series dives into NF care & treatment.

🔗Register here: https://t.co/9ocOB4dTd5

#EndNF

[RASopathies Network @RASopathiesnet]

@CostelloKids

[RASopathies Network @RASopathiesnet]

Describes use of #MEKi (MEK inhibitor) for #arrhythmia in absence of #cardiomyopathy in child with
#Costellosyndrome #RASopathies
More evidence for therapeutic benefit of MEKi
���🧪 https://t.co/gRn4EzAhop

[RASopathies Network @RASopathiesnet]

@GregAndelfinger Congratulations!!! The results are so promising. Thank you for your hard work and dedication.

[Gregor Andelfinger @GregAndelfinger]

Hot off the press! Excited to share our work ‘Impact of MEK Inhibition on
Childhood RASopathy-Associated
Hypertrophic Cardiomyopathy’ published in JACC BTS! Huge shoutout to all co-authors who stuck with us!! https://t.co/kIMHRF78gJ

[RASopathies Network @RASopathiesnet]

RASopathy syndromes affect brain development, behavior, cognition, & processing which can lead to cause anxiety, autism, ADHD, & seizures. This project will establish a platform to study nerve connections in a dish & how they respond to experimental therapeutic drugs!

[RASopathies Network @RASopathiesnet]

Congratulations to @SattarKhoshkhoo, on his selection to receive the #RASopathies Network MDBR Research Award for his project entitled "An iPSC-based Platform for Characterization of Neuronal Circuit Dysfunction in RASopathies" https://t.co/GlKyEUh16M

[RASopathies Network @RASopathiesnet]

@yogeshgoyallab @chorye Ask them what latest popular science article or tv show or news they found really interesting and why! i.e. Are they naturally curious?

[RASopathies Network @RASopathiesnet]

@hanspschlecht Happy New Year! We're not podcasters (yet), but you can find and subscribe to our webinars about #RASopathies and #raredisease https://t.co/JFRB8NQV6s

[RASopathies Network @RASopathiesnet]

Thanks for the shout out! If you aren't sure how to access and what will be in the survey (in case you want to gather materials beforehand), watch our webinar to explain more #RASopathies @id_cure
https://t.co/uOAsa2fEaR

[CURE ID @id_cure]

Please continue to help us spread the word about CURE ID so it can be an effective resource for patients, caregivers/partners and clinicians alike! @drraghutg @DrJudyStone @tmprowell @patientled @ahandvanish @Dysautonomia @RASopathiesnet @CureSarcoma @sarcomapatients /6

[CURE ID @id_cure]

Please continue to help us spread the word about CURE ID so it can be an effective resource for patients, caregivers/partners and clinicians alike! @drraghutg @DrJudyStone @tmprowell @patientled @ahandvanish @Dysautonomia @RASopathiesnet @CureSarcoma @sarcomapatients /6

[Kelly A. Hogan Ph.D. @Loose_Lab_Rat]

Clinical features and molecular genetics of patients with RASopathies: expanding the phenotype with rare genes and novel variants https://t.co/a6OF9mZMKw

[RASopathies Network @RASopathiesnet]

Portraying the full picture of Neurofibromatosis–Noonan syndrome: a systematic review of literature https://t.co/JyuwAAS8Nx