RASopathies Network (@rasopathiesnet) 's Twitter Profile
RASopathies Network

@rasopathiesnet

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

ID: 2836214937

linkhttps://rasopathiesnet.org/ calendar_today18-10-2014 15:43:28

2,2K Tweet

1,1K Followers

1,1K Following

RASopathies Network (@rasopathiesnet) 's Twitter Profile Photo

Congrats to all who contributed! 🫀🫀 Impact of MEK Inhibition on Childhood RASopathy-Associated Hypertrophic Cardiomyopathy | JACC: Basic to Translational Science "Trametinib significantly reduced death, transplant, and cardiac surgery risk." jacc.org/doi/10.1016/j.…

RASopathies Network (@rasopathiesnet) 's Twitter Profile Photo

Portraying the full picture of Neurofibromatosis–Noonan syndrome: a systematic review of literature jmg.bmj.com/content/early/…

Kelly A. Hogan Ph.D. (@loose_lab_rat) 's Twitter Profile Photo

Clinical features and molecular genetics of patients with RASopathies: expanding the phenotype with rare genes and novel variants pubmed.ncbi.nlm.nih.gov/39725732/

RASopathies Network (@rasopathiesnet) 's Twitter Profile Photo

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 CURE ID youtu.be/bqT5UyWdE2M?si…

Gregor Andelfinger (@gregandelfinger) 's Twitter Profile Photo

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!! jacc.org/doi/epdf/10.10…

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!! jacc.org/doi/epdf/10.10…
Children's Tumor Fdn (@childrenstumor) 's Twitter Profile Photo

👋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: go.ctf.org/VCC2025 #EndNF

👋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: go.ctf.org/VCC2025

#EndNF
CDC Flu (@cdcflu) 's Twitter Profile Photo

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: bit.ly/4gFspqo

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: bit.ly/4gFspqo
Helen Branswell 🇨🇦 (@helenbranswell) 's Twitter Profile Photo

Is the communications pause that's been imposed on the US government's health agencies affecting you? STAT would love to hear about it. Please let us know. statnews.com/2025/01/25/tru…

Rare Epilepsy Network (@rareepilepsy) 's Twitter Profile Photo

Check out our upcoming event, Growing Together: Navigating the Life Stage Checklist for Families. us02web.zoom.us/webinar/regist…

Check out our upcoming event, Growing Together: Navigating the Life Stage Checklist for Families. us02web.zoom.us/webinar/regist…
Rare Disease Day (@rarediseaseday) 's Twitter Profile Photo

💜🌍 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: rarediseaseday.org

💜🌍 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: rarediseaseday.org