Cri Du Chat Research Foundation

We are still in need of particpants. Please consider!

A Disease Concept Model (DCM) study helps researchers better understand a condition by identifying the symptoms, challenges, and impacts that matter most to individuals living with the condition—and to their caregivers. These insights are essential for improving treatments and ensuring clinical trials measure outcomes that will truly make a difference.

The Cri du Chat Research Foundation is currently recruiting caregivers of individuals with Cri du chat syndrome (deletion only genotype) to participate in a ~90-minute interview conducted by a genetic counseling master's student. This study aims to deepen our understanding of what matters most when treating symptoms and evaluating meaningful change in clinical trials.

*Other genotypes will take place in future Disease Concept Model studies- stay tuned for further information*

🗓 Interviews will take place during the summer-early fall of 2026.

If you’re interested in participating, please contact: [email protected] or send a message via social media

Your voice can help shape the future of care and research 💙
COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental

🎉 BIG NEWS for 5p- Syndrome families.

We’ve been invited to get early access to help test the upgraded AI Advocate from Citizen Health.

Meet Ari.

Ari is an AI health companion that doesn't just answer your questions, but can take on the work for you - symptom tracking, appeals, spotting trends and more – your proactive, human-like advocate is ready to bring you relief.

We have our first 25 spots for community members now available and these users will get free premium access through the end of the year.. If you want to be one of our founding families using and testing Ari with us, it only takes a minute to get started. If you already have a Citizen Health account, you will still need to sign up separately but you will be able to link your previous account

Sign up in a minute here: www.citizen.health/join/cri-du-chat

A few things Ari can do to help take things off your plate:

📊 Symptom tracking
🛡️Appeal a denial
📅 Spot what’s coming
🔬 Read new labs

Ari is in early testing and access is invite-only at no cost. Citizen Health is building it with families like ours, and your feedback shapes what comes next — which is exactly why we wanted our community in early.


Citizen Health