Noonan Syndrome Network

We're at the 8th International RASopathies Symposium in Denver @RASopathiesnet #noonansyndrome

Our vision statement:

As part of #RareDC2020, we met with @RepThompson to talk about #NoonanSyndrome and to ask him to support @RareAdvocates legislative agenda to expand care and support funding for rare diseases. Thank you, @EveryLifeOrg & @RareAdvocates for organizing this important event!

We're here in Washington DC attending and participating in Rare Disease Week on Capitol Hill #RareDC2020 #NoonanSyndrome

Welcome Michael Hund of @EBResearch sharing his thoughts on their multi-stakholder platform. #DataDIY #RareDisease

EBRP CEO @MichaelPHund is speaking at @GlobalGenes #DataDIY in Houston today on our work with @awscloud to leverage data to #healEB. Click here to register and view the livestream: bit.ly/2vNiwFn

We're attending @globalgenes Data DIY In Houston. Here Dr. David Spencer of @biopontis is presenting a session on "Refining Your Strategy: Building a Bridge to Treatment Options."

Look at these gorgeous faces! We’re the same but different @noonansyndrome #NoonanSyndrome @GeneticAll_UK @Noonan_Syndrome @NoonanNet @NoonanArgentina @Noonan2015

Listening to author and advocate @kristinsmedley speak about "Using Guerilla Marketing to Advance Research" at the @globalgenes #DataDIY Workshop #3: Collaborative Research Networks. #RareDisease #NoonanSyndrome @… instagram.com/p/B4DTIHDpsrA/…

Listening to @DavidFajgenbaum present at the @GlobalGenes #DataDIY Workshop #3: Collaborative Research Networks. #RareDisease #NoonanSyndrome

“new insights into the understanding of SHP2 function in platelets, points to new thrombopathies linked to platelet signaling defects & provides important info for medical care of Noonan syndrome patients in situations at risk of bleeding” #haematology bloodjournal.org/content/early/…

Coming soon! Follow us on: Twitter: twitter.com/NoonanNet Instagram: instagram.com/NoonanSyndrome instagram.com/p/B3C9_59gOtv/…

Doing the #WarriorFlex at @DavidFajgenbaum's "Chasing My Cure" book signing @GlobalGenes Rare Patient Advocacy Summit. @CureCastleman #RareDisease #NoonanSyndrome #CareAboutRare

Listening to @DavidFajgenbaum at @GlobalGenes Rare Patient Advocacy Summit's Day 2 opening presentation. @CureCastleman #RareDisease #CareAboutRare

Attending @GlobalGenes Rare Patient Advocacy Summit's Track 2 - Building and Activating Your Community. #RareDisease #CareAboutRare #NoonanSyndrome

@AarskogSyndrome @GlobalGenes No, she's @NoonanSyndrome1

@NoonanNet @GlobalGenes Amanda?

Excited to be in San Diego today for the @GlobalGenes Rare Patient Advocacy Summit! Hope to see you there! #NoonanSyndrome #RareDisease #2019GGSUMMIT

The Noonan Syndrome Network will be here soon. Follow us on Twitter at @NoonanNet for upcoming info. #NoonanSyndrome #Rasopathies #RareDiseases