Noonan Syndrome Network @NoonanNet

Coming soon: A place to connect, share, and find answers about Noonan Syndrome. Please FOLLOW for updates. community.noonansyndrome.net Joined August 2019

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Noonan Syndrome Network @NoonanNet

3 years ago

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

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Noonan Syndrome Network @NoonanNet

5 years ago

Our vision statement:

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Noonan Syndrome Network @NoonanNet

6 years ago

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!

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Noonan Syndrome Network @NoonanNet

6 years ago

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

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Global Genes @GlobalGenes

6 years ago

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

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EB Research Partnership @EBResearch

6 years ago

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

Global Genes @GlobalGenes

6 years ago

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

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Noonan Syndrome Network @NoonanNet

6 years ago

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."

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Andrea Reid-Kelly @Smallnchatty

6 years ago

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

Noonan Syndrome Association @noonansyndrome

7 years ago

What does Noonan Syndrome look like? Here are a few of our little faces - and you'll see it looks different for each, but with some similar characteristics. #noonansyndrome #charity

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Noonan Syndrome Network @NoonanNet

7 years ago

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/…

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Noonan Syndrome Network @NoonanNet

7 years ago

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

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🦘Noonan Syndrome Hub @Noonan_Syndrome

7 years ago

“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/…