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CCHS Network Profile
CCHS Network

@CCHSNetwork

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A 501(c)3 organization dedicated to raising awareness, funds, and family support for congenital central hypoventilation syndrome (CCHS), a rare orphan disease.

www.cchsnetwork.org
Joined September 2011
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@CCHSNetwork
CCHS Network
2 years
The 9th Annual International CCHS Day is exactly one month away. Let your light shine for our rare disease on September 23rd and help guarantee a brighter future for our community! For full details, click on the link in bio or go to
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@CCHSNetwork
CCHS Network
3 years
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@grok
Grok
26 days
The most fun image & video creation tool in the world is here. Try it for free in the Grok App.
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@CCHSNetwork
CCHS Network
3 years
Tomorrow is CCHS Day! Please help us deliver a unified message of advocacy by posting the following image on your social media accounts. #cchsnetwork #castalightoncchs #cchsday2022
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@CCHSNetwork
CCHS Network
3 years
Just in time for CCHS Day 2022, our redesigned website is now LIVE! #cchsnetwork #castalightoncchs #cchsday2022
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@CCHSNetwork
CCHS Network
3 years
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@CCHSNetwork
CCHS Network
3 years
Happy Halloween from our little tricksters!!! #cchsnetwork #castalightoncchs
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@CCHSNetwork
CCHS Network
3 years
Happy Halloween from our little tricksters!!! #cchsnetwork #castalightoncchs
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@CCHSNetwork
CCHS Network
3 years
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@CCHSNetwork
CCHS Network
3 years
Two weeks from today…CCHS Day 2022!!! #cchsnetwork #castalightoncchs #cchsday2022
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@CCHSNetwork
CCHS Network
3 years
Three weeks from today. CCHS Day. November 12th!!!. #cchsnetwork #castalightoncchs #cchsday2022
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@CCHSNetwork
CCHS Network
3 years
Bonfire Glow-In-The-Dark Shirts, Sweatshirts and Onesies: CCHS Firefly Pin: #cchsnetwork #cchsday2022 #castalightoncchs
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@CCHSNetwork
CCHS Network
3 years
We’re casting a light on our happy little camper, Abby! #cchsnetwork #castalightoncchs #cchsday2022
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@CCHSNetwork
CCHS Network
3 years
We are casting a light on our little love bug, Lexi! #cchsnetwork #castalightoncchs #cchsday2022
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@CCHSNetwork
CCHS Network
3 years
The CCHS Network is excited to launch our new logo and brand. Go to for more information and to learn about CCHS Day 2022 happening on November 12th (including the sale of shirts and pins). #cchsnetwork #castalightoncchs #cchsday2022
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@CCHSNetwork
CCHS Network
3 years
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@CCHSNetwork
CCHS Network
4 years
TWITTER.Happy CCHS Day! Watch our call to action video below, and post your own wave videos, or tag a friend for the #jointhewaveforcchs challenge. Go to to donate and learn more about this heartbreaking disease
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@CCHSNetwork
CCHS Network
4 years
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@CCHSNetwork
CCHS Network
4 years
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@CCHSNetwork
CCHS Network
4 years
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@CCHSNetwork
CCHS Network
4 years
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