Congenital Central Hypoventilation Syndrome is caused by mutations in the paired-like homeobox gene PHOX2B, which alters control of breathing and autonomic nervous system regulation, necessitating artificial ventilation as life-support.
To be involved please email info@keepmebreathing.com
Please take a look at the 130+ professionals who have backed Keep Me Breathing. The largest group ever for a rare disease like CCHS.
Keep Me Breathing were guest speakers at the conference held in Florida in September 2023 and the CCHS Family Conference in July 2024
Read our blog on The Cambridge Consulting Network pacer project that commenced on 2nd November 2022.
Click through to watch the video on attendees of our yearly International Board Meeting in London held on 31st March
The effects of being born with CCHS are devastating, with no cure and limited therapeutic options available to patients while they sleep beyond artificial life support. We are addressing the urgent need for advanced treatments that can both improve and save the lives of people diagnosed with CCHS by combining advances in innovation and technology with the known science of CCHS and a relentless approach to getting results.
To face down that challenge we have built a world class team within our Medical and Entrepreneur Advisory Board. Our immediate project action will be building an advanced Phrenic Nerve Pacer that is truly implantable and delivers on our promise to make a world of difference to patients, and save lives.
© 2025 All Rights Reserved. Keep Me Breathing. Registered Charity Number: 1201757.
