About CCHS UK Objectives CCHS UK exists to support individuals and families affected by Congenital Central Hypoventilation Syndrome (CCHS) — a rare and lifelong condition that affects automatic breathing, particularly during sleep. We are a UK charity dedicated to this ultra-rare disorder. We serve children, adults, and families living with CCHS, offering advocacy, education, emotional support, and representation at national and international levels. Our goal is to improve lives, influence policy, and accelerate research into treatments and care pathways. Activities CCHS UK is a parent-led charity with a bold vision to grow our impact. Here's how we work:

Support & Community: We provide direct emotional support to families, offer peer-to-peer networks, and produce accessible resources to help families navigate complex health and social care systems. Education & Awareness: We advocate across schools, NHS services, and social care for appropriate accommodations for individuals with CCHS and co-occurring conditions like learning needs or physical disabilities. Research & Clinical Links: We actively partner with clinicians and researchers in the UK and abroad, helping shape the global research agenda through our participation in international collaborations. Advocacy & Voice: As a lived-experience-led organisation, we raise awareness of CCHS across policy, commissioning, and media platforms — ensuring families’ voices are heard.

Why This Matters CCHS is life-threatening, yet poorly understood. Most families must navigate fragmented care, inadequate support, and isolation. With no cure, ventilatory support is essential — but access to services, education, and family wellbeing often depends on advocacy. CCHS UK provides a lifeline —  we’re small, ambitious, and seeking committed volunteers to help us grow our infrastructure, reach, and sustainability.