Breathe Together

Breathe Together:
Your CCHS Compass

A guided digital companion for families living with CCHS - from diagnosis to school, travel, emergencies and long-term planning.

Start Your Family ProfileExplore the Platform

Built for families. Guided by trusted sources. Designed to support - not replace - medical care.

CCHS is rare, complex and lifelong. Families often make practical decisions with limited local expertise and scattered information. Breathe Together brings the most important pieces into one calm, structured space.

Personalized family profile Trusted CCHS knowledge base AI-guided questions & answers Medical document upload Emergency medical profile Community & research insights

Families should not navigate CCHS alone

After a diagnosis, families search for answers across papers, Facebook groups, WhatsApp, hospital summaries and other parents. The questions never really stop:

“What should we ask our doctor?”
“How do we prepare for school?”
“What should we know before flying?”
“What should be ready in an emergency?”
“How do we explain CCHS to caregivers?”
“Is this research, community or general guidance?”

Breathe Together turns scattered information into organized support.

How Breathe Together works

A calm, step-by-step journey - not a dense medical form.

1

Tell us where you are

A short guided questionnaire about your CCHS situation, stage, country, language, ventilation and concerns.

2

Build your family profile

Keep diagnosis, PHOX2B genotype, ventilation needs, contacts, physicians and care topics in one private place.

3

Upload medical documents

Add discharge letters, genetic results, sleep studies or emergency plans - they stay in your private space.

4

Receive a personalized brief

A clear summary of your situation, key topics, questions to consider and areas to raise with your team.

5

Ask the Compass

Ask practical questions and get calm, balanced answers that clearly mark where the information comes from.

6

Prepare for real life

Generate checklists, doctor questions, school notes, travel planning and a printable emergency profile.

How will you use Breathe Together?

Admin and professional access is approved manually. Family information is private and not visible to other users.

Family / User

Create your profile, upload information, ask questions and generate your emergency profile.

Continue as Family

Administrator

For approved organizations. View statistics, manage roles and review anonymized insights.

Admin Console

Professional

For approved clinicians and researchers. Aggregate insights without identifiable family data.

Continue as Professional

Every answer shows where it comes from

Families deserve to know whether an answer is research, community experience, official guidance or their own documents.

📚 Research👥 Community🏥 Official📋 Your documents🧠 General AI
Understand our sources →

Built with families, not just for families

Join the CCHS pilot and help shape a safer, clearer digital companion for the community.

Join the PilotStart Your Family Profile