CCHS Network

2K posts

CCHS Network

@CCHSNetwork

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 Beigetreten Eylül 2011

79 Folgt434 Follower

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CCHS Network@CCHSNetwork·24 Ağu

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 cchsnetwork.org/cchs-day-2023.

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CCHS Network@CCHSNetwork·24 Kas

Just posted a photo instagram.com/p/ClWcMZNJzuh/…

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CCHS Network@CCHSNetwork·12 Kas

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 instagram.com/p/Ck1siiRJdJ9/…

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CCHS Network@CCHSNetwork·11 Kas

Just in time for CCHS Day 2022, our redesigned website is now LIVE! #cchsnetwork #castalightoncchs #cchsday2022

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CCHS Network@CCHSNetwork·10 Kas

Just posted a photo instagram.com/p/CkwjzKFJsU1/…

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CCHS Network@CCHSNetwork·1 Kas

Happy Halloween from our little tricksters!!! #cchsnetwork #castalightoncchs instagram.com/p/CkZyVfsuQbX/…

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CCHS Network@CCHSNetwork·1 Kas

Happy Halloween from our little tricksters!!! #cchsnetwork #castalightoncchs instagram.com/p/CkZvkqIOyAM/…

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CCHS Network@CCHSNetwork·30 Eki

Just posted a photo instagram.com/p/CkWHccrpUrP/…

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CCHS Network@CCHSNetwork·29 Eki

Two weeks from today…CCHS Day 2022!!! #cchsnetwork #castalightoncchs #cchsday2022 instagram.com/p/CkTa-W7OIX_/…

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CCHS Network@CCHSNetwork·23 Eki

Three weeks from today...CCHS Day...November 12th!!! #cchsnetwork #castalightoncchs #cchsday2022

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CCHS Network@CCHSNetwork·19 Eki

Bonfire Glow-In-The-Dark Shirts, Sweatshirts and Onesies: bonfire.com/store/cchs/ CCHS Firefly Pin: cchsnetwork.org/buy-your-firef… #cchsnetwork #cchsday2022 #castalightoncchs

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CCHS Network@CCHSNetwork·17 Eki

We’re casting a light on our happy little camper, Abby! #cchsnetwork #castalightoncchs #cchsday2022 instagram.com/p/Cj0H1jLO9_7/…

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CCHS Network@CCHSNetwork·7 Eki

We are casting a light on our little love bug, Lexi! #cchsnetwork #castalightoncchs #cchsday2022

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CCHS Network@CCHSNetwork·5 Eki

The CCHS Network is excited to launch our new logo and brand. Go to cchsnetwork.org 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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CCHS Network@CCHSNetwork·5 Eki

Just posted a photo instagram.com/p/CjT3pyEp1ee/…

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CCHS Network@CCHSNetwork·13 Kas

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 cchsnetwork.org to donate and learn more about this heartbreaking disease

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CCHS Network@CCHSNetwork·1 Nis

Just posted a photo instagram.com/p/CNIO6hDJj71/…

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CCHS Network@CCHSNetwork·29 Mar

Just posted a photo instagram.com/p/CNAqnNJJo9S/…

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CCHS Network@CCHSNetwork·25 Mar

Just posted a photo instagram.com/p/CM2pSgQJn-Q/…

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CCHS Network@CCHSNetwork·22 Mar

Just posted a photo instagram.com/p/CMuzv7ppkMk/…

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