CCHS Network

@cchsnetwork

We fund and support research, raise awareness, and empower patients and families with knowledge about Congenital Central Hypoventilation Syndrome.
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579
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3,716
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What Giving Tuesday means to our orphan disease community... Donate today by clicking on the fundraiser button or go to /donate. For more information on CCHS, see link in profile. #hope #castalightoncchs #cchsnetwork
75 0
4 months ago
Today is the 9th Annual International CCHS Day! Congenital Central Hypoventilation Syndrome (CCHS) is one of the rarest conditions in the world, affecting approximately 2000 individuals globally. There is no drug or cure and the only intervention is mechanical ventilation. Please add your light to our cause today and help ensure a brighter future for our brave, determined and resilient community! Please see the link in profile to donate now. For more information, go to . #letitshine #cchsday2023 #castalightoncchs
127 2
6 months ago
Last week, the world honored Rare Disease Day. Greta and her parents, Maddie and Ryan, stepped up and took the theme of "Light Up For Rare" to the Big Four Bridge in Louisville, Kentucky! See the news clips below to hear their story and watch Greta's eyes light up as the bridge twinkles blue and purple for CCHS! #castalightoncchs #rarediseaseday #cchsnetwork /article/news/local/rare-disease-day-louisville-toddle-greta-wermeling-cchs-congenital-central-hypoventilation-syndrome/417-6ffd1290-3fb9-4eed-a2cd-69257b76b756 /article/life/heartwarming/greta/417-912f9299-ce32-4c44-908f-f3c7b3ae5fd8?fbclid=IwAR3gdQ-qjkdBKSzeo_R5sLe1z4yUOvom9kDzVXWH-JH8sMCNlHcRv0a03Zg
47 2
21 days ago
Today is Rare Disease Day 2024!!! It's time to RISE up for CCHS and SHINE a light on one of the rarest conditions in the world! #RareDiseaseDay #castalightoncchs #riseandshine4cchs
134 7
1 month ago
As we countdown to Rare Disease Day on February 29th, we are shining a light on how our community rises against CCHS every morning! #riseandshine4cchs #raredisease #rarediseaseday #cchsawareness #castalightoncchs
48 0
1 month ago
As we countdown to Rare Disease Day on February 29th, we are shining a light on how our community rises against CCHS every morning! #riseandshine4cchs #raredisease #rarediseaseday #cchsawareness #castalightoncchs
63 4
1 month ago
As we countdown to Rare Disease Day on February 29th, we are shining a light on how our community rises against CCHS every morning! #riseandshine4cchs #raredisease #rarediseaseday #cchsawareness #castalightoncchs
44 0
1 month ago
As we countdown to Rare Disease Day on February 29th, we are shining a light on how our community rises against CCHS every morning! #riseandshine4cchs #raredisease #rarediseaseday #cchsawareness #castalightoncchs
52 2
1 month ago
As we countdown to Rare Disease Day on February 29th, we are shining a light on how our community rises against CCHS every morning! #riseandshine4cchs #raredisease #rarediseaseday #cchsawareness #castalightoncchs
38 0
1 month ago
As we countdown to Rare Disease Day on February 29th, we are shining a light on how our community rises against CCHS every morning! #riseandshine4cchs #raredisease #rarediseaseday #cchsawareness #castalightoncchs
55 0
1 month ago
As we countdown to Rare Disease Day on February 29th, we are shining a light on how our community rises against CCHS every morning! #riseandshine4cchs #raredisease #rarediseaseday #cchsawareness #castalightoncchs
72 0
1 month ago
As we countdown to Rare Disease Day on February 29th, we are shining a light on how our community rises against CCHS every morning! #riseandshine4cchs #raredisease #rarediseaseday #cchsawareness #castalightoncchs
60 0
1 month ago