Join us for an incredible line up of events dedicated to raising awareness and support for those affected by Congenital Central Hypoventilation Syndrome (CCHS). Whether you’re a seasoned runner or just looking to be part of something meaningful, there’s an event for you! From the Run for Rare on February 26, 2025, to the Brighton Marathon and 10K on April …
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As you know we have an ambitious plan to fund, develop and bring a new CCHS treatment to market with a 5 year accelerated plan backed by over 130 doctors, scientists and medical professionals. Thank you so much for contributing to this. Why are we so relentless? Because for children like Casper, Beau and Tiger-Lily (that’s in Sussex alone!) and the …
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