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    • What is CCHS For Patients and Parents
    • CCHS for Professionals
    • What is the cause of Congenital Central Hypoventilation Syndrome
    • Stories
      • Casper’s Story
      • Beau’s Story
      • More CCHS Stories
    • How many patients with CCHS?
    • CCHS. Mask vs Tracheostomy vs Pacer
    • CCHS Treatment and Options
    • Partners
  • Updates
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Music with Mike: The Main Stage

  • November 18, 2025
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Brighton Half Marathon

  • August 11, 2025
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Brighton & Hove 10k / Brighton Marathon

  • July 25, 2025
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Our First Book Launch!

  • September 13, 2024
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Run for Rare #RareDiseaseDay

  • January 14, 2025
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Broadwater Carnival & Worthing Fire Station Open Day

  • May 28, 2024
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John O’Groats to Land’s End

  • July 11, 2024
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West Worthing Club Charity Day

  • July 11, 2024
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It’s a Knockout Challenge UK

  • July 11, 2024
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A.C.E. School Fair

  • May 28, 2024
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We Won't Stop

Relentlessly researching and developing treatments and a cure.

Recent Posts

  • Ride for Rare BBC Radio Sussex Interview with Keep Me Breathing Founder James Oakley
  • From charity to MedTech innovator: Keep Me Breathing launches 1,000-mile ‘Ride for Rare’ validation challenge for wearable CO2 monitor
  • University of Portsmouth News Announcement for VENTO
  • Front Line Genomics Interview With James Oakley

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CCHS Drug Development Impact Report Mechanical Pacing Sharing the CCHS treatment journey Technology Update

Recent Posts

  • Ride for Rare BBC Radio Sussex Interview with Keep Me Breathing Founder James Oakley
  • From charity to MedTech innovator: Keep Me Breathing launches 1,000-mile ‘Ride for Rare’ validation challenge for wearable CO2 monitor
  • University of Portsmouth News Announcement for VENTO
  • Front Line Genomics Interview With James Oakley
  • Day In The Life Interview With Tiger-Lily’s Mum, Vicky

Recent Comments

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  2. Victoria Sykes on New Interview with our own Eloise
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