CCHS Day 2022

Over the past eight years, International CCHS Day has been a beacon of light, generating a surge of awareness and advocacy for our orphan disease. Like a firefly lighting up the night sky, we invite our community of families and supporters to help CCHS shine fiercely this CCHS Day, November 12th, 2022.

More Information to come!


Like a firefly lighting up the night sky, we invite our community of families and supporters to shine a bright light on our orphan disease this CCHS Day.

Glow Big This Day CCHS Tshirt

Purchase your “Glow in the Dark” t-shirts by October 19 to ensure delivery by CCHS Day.

CCHS Firefly Lapel Pin

Please click HERE to purchase your pin. Purchase by October 19 to ensure delivery by CCHS Day.

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