Noonan Syndrome Network

Coming soon: A place to connect, share, and find answers about Noonan Syndrome.

Please FOLLOW for updates.

[Noonan Syndrome Network @NoonanNet]

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

[Noonan Syndrome Network @NoonanNet]

Our vision statement:

[Noonan Syndrome Network @NoonanNet]

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!

[Noonan Syndrome Network @NoonanNet]

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

[Global Genes @GlobalGenes]

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

[EB Research Partnership @EBResearch]

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: https://t.co/vGAl38TfPB

[Noonan Syndrome Network @NoonanNet]

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."

[Andrea Reid-Kelly @Smallnchatty]

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

[Noonan Syndrome Network @NoonanNet]

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 @… https://t.co/C8EvPk6yOF

[Noonan Syndrome Network @NoonanNet]

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

[🦘Noonan Syndrome Hub @Noonan_Syndrome]

“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 https://t.co/88ReNVRSjb

[Noonan Syndrome Network @NoonanNet]

Coming soon! Follow us on:

Twitter: https://t.co/xWnD0k7YTk
Instagram: https://t.co/AbJLtYCuw2 https://t.co/9RE4wTAK3B

[Noonan Syndrome Network @NoonanNet]

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

[Noonan Syndrome Network @NoonanNet]

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

[Noonan Syndrome Network @NoonanNet]

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

[Noonan Syndrome Network @NoonanNet]

@AarskogSyndrome @GlobalGenes No, she's @NoonanSyndrome1

[Noonan Syndrome Network @NoonanNet]

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

[Noonan Syndrome Network @NoonanNet]

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