RASopathies Network
@rasnet.bsky.social
Nonprofit research advocacy org for conditions caused by dysfunctional RAS/MAPK signaling. #rasopathies #raredisease
by Stronach in Pittsburgh
by Stronach in Pittsburgh
More on RASopathies and hearts 🫀
16% of pediatric hypertrophic cardiomyopathy cases were due to RASopathy in this cohort. #cardiosky #pedsky 🧪
rdcu.be/eL36v
16% of pediatric hypertrophic cardiomyopathy cases were due to RASopathy in this cohort. #cardiosky #pedsky 🧪
rdcu.be/eL36v
October 21, 2025 at 9:01 PM
More on RASopathies and hearts 🫀
16% of pediatric hypertrophic cardiomyopathy cases were due to RASopathy in this cohort. #cardiosky #pedsky 🧪
rdcu.be/eL36v
16% of pediatric hypertrophic cardiomyopathy cases were due to RASopathy in this cohort. #cardiosky #pedsky 🧪
rdcu.be/eL36v
🦴💪 Join us - the Skeletal Conditions Advocacy Coalition - and Life Sciences Pennsylvania - for an event at the PA capitol with the #raredisease caucus and #disability advocates. OCT 28, 2025
tinyurl.com/y5vjxmkv
tinyurl.com/y5vjxmkv
October 17, 2025 at 1:26 PM
🦴💪 Join us - the Skeletal Conditions Advocacy Coalition - and Life Sciences Pennsylvania - for an event at the PA capitol with the #raredisease caucus and #disability advocates. OCT 28, 2025
tinyurl.com/y5vjxmkv
tinyurl.com/y5vjxmkv
Heartfelt thank-you to all of the sponsors who contributed to making this a highly successful and informative meeting.
August 19, 2025 at 7:17 PM
Heartfelt thank-you to all of the sponsors who contributed to making this a highly successful and informative meeting.
The 9th International #RASopathies Symposium brought together a really fantastic group of participants & attendees. Inspiring to see the new generation coming up.
PRIORITY1️⃣Repositioning therapeutics developed for RAS-ERK signaling in oncology for the mosaic & syndromic RASopathy conditions 🙏
🧪
PRIORITY1️⃣Repositioning therapeutics developed for RAS-ERK signaling in oncology for the mosaic & syndromic RASopathy conditions 🙏
🧪
August 19, 2025 at 7:17 PM
The 9th International #RASopathies Symposium brought together a really fantastic group of participants & attendees. Inspiring to see the new generation coming up.
PRIORITY1️⃣Repositioning therapeutics developed for RAS-ERK signaling in oncology for the mosaic & syndromic RASopathy conditions 🙏
🧪
PRIORITY1️⃣Repositioning therapeutics developed for RAS-ERK signaling in oncology for the mosaic & syndromic RASopathy conditions 🙏
🧪
We're ready to go! Hoping for good weather for all the travelers.
Can't make it in person -- attend virtually.
🧪 #medsky #cardiosky #oncosky #academicsky #neurosky
#Rasopathies #ras #kras #mek #raredisease #research #treatments #noonansyndrome #cfcsyndrome #nf1 #costellosyndrome
Can't make it in person -- attend virtually.
🧪 #medsky #cardiosky #oncosky #academicsky #neurosky
#Rasopathies #ras #kras #mek #raredisease #research #treatments #noonansyndrome #cfcsyndrome #nf1 #costellosyndrome
July 19, 2025 at 3:43 PM
We're ready to go! Hoping for good weather for all the travelers.
Can't make it in person -- attend virtually.
🧪 #medsky #cardiosky #oncosky #academicsky #neurosky
#Rasopathies #ras #kras #mek #raredisease #research #treatments #noonansyndrome #cfcsyndrome #nf1 #costellosyndrome
Can't make it in person -- attend virtually.
🧪 #medsky #cardiosky #oncosky #academicsky #neurosky
#Rasopathies #ras #kras #mek #raredisease #research #treatments #noonansyndrome #cfcsyndrome #nf1 #costellosyndrome
RAS isn't just a cancer gene! Learn more about conditions linked to altered #RAS #MEK #MAPK signaling? The "RASopathies" are among the largest group of systemic congenital disorders. See how variants in RAS pathway components affect human development & biology. 🧪
#cansky #oncosky #pedsky #devsky
#cansky #oncosky #pedsky #devsky
July 1, 2025 at 4:39 PM
⚡️After a long and, at times, tense process lasting nearly 11 months, we are excited to announce that we received partial funding from NIH National Center for Advancing Translational Sciences (NCATS) to support the RASopathies Symposium!
We are thankful for all our generous sponsors 🙌
We are thankful for all our generous sponsors 🙌
June 19, 2025 at 3:42 AM
⚡️After a long and, at times, tense process lasting nearly 11 months, we are excited to announce that we received partial funding from NIH National Center for Advancing Translational Sciences (NCATS) to support the RASopathies Symposium!
We are thankful for all our generous sponsors 🙌
We are thankful for all our generous sponsors 🙌
🧪
-First steps toward building natural history of diseases computationally: Lessons learned from the Noonan syndrome use case-
Phenotype trajectory is an informative way to visualize the data for individuals and as a whole.
doi.org/10.1016/j.aj...
-First steps toward building natural history of diseases computationally: Lessons learned from the Noonan syndrome use case-
Phenotype trajectory is an informative way to visualize the data for individuals and as a whole.
doi.org/10.1016/j.aj...
June 10, 2025 at 6:38 PM
🧪
-First steps toward building natural history of diseases computationally: Lessons learned from the Noonan syndrome use case-
Phenotype trajectory is an informative way to visualize the data for individuals and as a whole.
doi.org/10.1016/j.aj...
-First steps toward building natural history of diseases computationally: Lessons learned from the Noonan syndrome use case-
Phenotype trajectory is an informative way to visualize the data for individuals and as a whole.
doi.org/10.1016/j.aj...
Our ears are burning…
RAS syndromes are called RASopathies 🙃
from the cancer causing RAS gene family
🔍
RAS syndromes are called RASopathies 🙃
from the cancer causing RAS gene family
🔍
May 27, 2025 at 11:41 PM
Our ears are burning…
RAS syndromes are called RASopathies 🙃
from the cancer causing RAS gene family
🔍
RAS syndromes are called RASopathies 🙃
from the cancer causing RAS gene family
🔍
Don't Miss Out! 🧪#pedsky#medsky#oncosky#cardiosky#neurosky#GI
Early registration and Abstract Submission Deadline Today!
for the 9th International RASopathies Symposium
Orlando, FL
July 25-27, 2025
MORE INFO: rasopathiesnet.org/symposia/
Early registration and Abstract Submission Deadline Today!
for the 9th International RASopathies Symposium
Orlando, FL
July 25-27, 2025
MORE INFO: rasopathiesnet.org/symposia/
May 15, 2025 at 4:19 PM
Don't Miss Out! 🧪#pedsky#medsky#oncosky#cardiosky#neurosky#GI
Early registration and Abstract Submission Deadline Today!
for the 9th International RASopathies Symposium
Orlando, FL
July 25-27, 2025
MORE INFO: rasopathiesnet.org/symposia/
Early registration and Abstract Submission Deadline Today!
for the 9th International RASopathies Symposium
Orlando, FL
July 25-27, 2025
MORE INFO: rasopathiesnet.org/symposia/
Heads up 🗣️
9️⃣ more days of EARLYBIRD rates to register for #RASopathies SYMPOSIUM
Don't miss the opportunity to interact with experts and advocates who will discuss physiological systems and treatment advances related to genetic conditions: #CFC #Noonan #Costello #NF1, #NSML, #Mazzanti syndromes
9️⃣ more days of EARLYBIRD rates to register for #RASopathies SYMPOSIUM
Don't miss the opportunity to interact with experts and advocates who will discuss physiological systems and treatment advances related to genetic conditions: #CFC #Noonan #Costello #NF1, #NSML, #Mazzanti syndromes
May 6, 2025 at 5:52 PM
I was invited to sit on an advisory board for a clinical trial. Thank you @biomarinpharma.bsky.social for embracing the patient voice for treatment of skeletal conditions. Delighted to meet the dedicated BioMarin team & fellow advocates in the #noonansyndrome & #turnersyndrome communities. #pedsky
May 5, 2025 at 4:25 PM
I was invited to sit on an advisory board for a clinical trial. Thank you @biomarinpharma.bsky.social for embracing the patient voice for treatment of skeletal conditions. Delighted to meet the dedicated BioMarin team & fellow advocates in the #noonansyndrome & #turnersyndrome communities. #pedsky
RASNet would like to thank our generous industry sponsors for supporting this scientific symposium.
Sessions on #GIsky 🤢 #lymphatic #cardiosky 🫀 #neurosky 🧠 #genetics 🧬 #cancer 🩺 #therapeutics 💊
Sessions on #GIsky 🤢 #lymphatic #cardiosky 🫀 #neurosky 🧠 #genetics 🧬 #cancer 🩺 #therapeutics 💊
April 29, 2025 at 3:48 PM
RASNet would like to thank our generous industry sponsors for supporting this scientific symposium.
Sessions on #GIsky 🤢 #lymphatic #cardiosky 🫀 #neurosky 🧠 #genetics 🧬 #cancer 🩺 #therapeutics 💊
Sessions on #GIsky 🤢 #lymphatic #cardiosky 🫀 #neurosky 🧠 #genetics 🧬 #cancer 🩺 #therapeutics 💊
Wondering what genes are linked to #RASopathies and their relative proportion in #Noonansyndrome and #CFCsyndrome?
#raredisease #genetics #pedsky 🧪🧬🩺
pubmed.ncbi.nlm.nih.gov/40207038/
#raredisease #genetics #pedsky 🧪🧬🩺
pubmed.ncbi.nlm.nih.gov/40207038/
April 12, 2025 at 7:50 PM
Wondering what genes are linked to #RASopathies and their relative proportion in #Noonansyndrome and #CFCsyndrome?
#raredisease #genetics #pedsky 🧪🧬🩺
pubmed.ncbi.nlm.nih.gov/40207038/
#raredisease #genetics #pedsky 🧪🧬🩺
pubmed.ncbi.nlm.nih.gov/40207038/
Speakers/Moderators
March 19, 2025 at 10:21 PM
Speakers/Moderators
🗣️ Registration is now open for the 9th International #RASopathies Symposium in July.
#RAS #MEK #research
#medsky #pedsky #oncsky #academicsky #cardiosky
#chronicillness #raredisease #geneticsyndromes
🧪🫀🦴💊🧠🦷👁️🩸🧬🩺🩻
#RAS #MEK #research
#medsky #pedsky #oncsky #academicsky #cardiosky
#chronicillness #raredisease #geneticsyndromes
🧪🫀🦴💊🧠🦷👁️🩸🧬🩺🩻
March 19, 2025 at 10:21 PM
🗣️ Registration is now open for the 9th International #RASopathies Symposium in July.
#RAS #MEK #research
#medsky #pedsky #oncsky #academicsky #cardiosky
#chronicillness #raredisease #geneticsyndromes
🧪🫀🦴💊🧠🦷👁️🩸🧬🩺🩻
#RAS #MEK #research
#medsky #pedsky #oncsky #academicsky #cardiosky
#chronicillness #raredisease #geneticsyndromes
🧪🫀🦴💊🧠🦷👁️🩸🧬🩺🩻
Some science! Trametinib as a targeted treatment in cardiac and lymphatic presentations of #Noonansyndrome pubmed.ncbi.nlm.nih.gov/40041314/
🧪#medsky #pedsky #RAS #raredisease
A case study and a review of published cases.
Look at that respiratory support curve at the bottom of the figure! 🫁
🧪#medsky #pedsky #RAS #raredisease
A case study and a review of published cases.
Look at that respiratory support curve at the bottom of the figure! 🫁
March 10, 2025 at 2:54 PM
Some science! Trametinib as a targeted treatment in cardiac and lymphatic presentations of #Noonansyndrome pubmed.ncbi.nlm.nih.gov/40041314/
🧪#medsky #pedsky #RAS #raredisease
A case study and a review of published cases.
Look at that respiratory support curve at the bottom of the figure! 🫁
🧪#medsky #pedsky #RAS #raredisease
A case study and a review of published cases.
Look at that respiratory support curve at the bottom of the figure! 🫁
On the road today 🧪
March 7, 2025 at 5:34 PM
On the road today 🧪
Rocking our zebra stripes for #RareDisease
highlighting the unmet needs of #RASopathy patients at the #RAS initiative conference
highlighting the unmet needs of #RASopathy patients at the #RAS initiative conference
February 28, 2025 at 7:09 PM
Rocking our zebra stripes for #RareDisease
highlighting the unmet needs of #RASopathy patients at the #RAS initiative conference
highlighting the unmet needs of #RASopathy patients at the #RAS initiative conference
Circulation Research. 2021;129:136–154. DOI: 10.1161/CIRCRESAHA.121.318142
CLA: Complex lymphatic anomalies
Not clear yet if / how these malformations in RASopathies impact cancer predisposition or immune function
CLA: Complex lymphatic anomalies
Not clear yet if / how these malformations in RASopathies impact cancer predisposition or immune function
February 23, 2025 at 7:42 PM
Circulation Research. 2021;129:136–154. DOI: 10.1161/CIRCRESAHA.121.318142
CLA: Complex lymphatic anomalies
Not clear yet if / how these malformations in RASopathies impact cancer predisposition or immune function
CLA: Complex lymphatic anomalies
Not clear yet if / how these malformations in RASopathies impact cancer predisposition or immune function
The most important part. Outcomes.
February 8, 2025 at 9:15 PM
The most important part. Outcomes.