Cri Du Chat Research Foundation

09/25/2026

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

08/29/2026

🧡 A heartfelt thank you to actor, writer, comedian, and native New Yorker, Pete Davidson, for taking the time to learn about 5p- syndrome (Cri du Chat syndrome), meet our Liam the Lion, and show him so much love. 🦁🧡

We couldn’t help but smile knowing that, along with being New York kids, you both have something pretty special in common… you’re both comedians! 😊

Pete, your genuine willingness to listen, learn, and shine a light on this rare and profound disorder means more to us than we can put into words.

And your generous donation to the Cri du Chat Research Foundation will help advance critical research and drug development for 5p-. We are incredibly grateful.

But this moment is about something much bigger than Cri du Chat.

Hundreds of millions of people live with rare diseases, yet most still have no treatment for the underlying cause.

Science is advancing at an extraordinary pace. Gene therapy, RNA therapies, and other disease-modifying technologies are creating possibilities that once seemed impossible. But the business model needed to bring these breakthroughs from the laboratory to rare disease patients is failing the very people who need them.

Families like ours are increasingly being asked to lead research and raise millions of dollars simply to create a path toward the treatments our children desperately need.

We cannot accept a future where the science exists, but access does not.

Every year matters. Every child matters. Every family waiting for an answer matters. Every dollar matters.

For children like Liam, disease-modifying therapies could potentially change the trajectory of their lives — not simply manage their symptoms.

That is why awareness matters. Why advocacy matters. Why investment matters. And why having people like Pete use their voice to stand beside our rare disease community matters.

Pete, thank you for seeing Liam, learning his story, supporting our mission, and helping the world see him — and the thousands of others living with 5p- syndrome, too. 🧡

Awareness creates connection.
Connection creates investment.
Investment creates innovation.
And innovation can create access to life-changing treatments.

Thank you Pete for using your platform and public figure status to shine a light on a rare disease community that so often goes unseen—and helping us create meaningful change for those living with 5p- syndrome.

🦁🧡 For Liam. For every 5p- family. And for every rare disease community fighting hard for science to catch up with possibility.

08/10/2026

Meet Dr. Pangkong Fox from the CACNA1A Foundation. Like so many of us, she was carrying it all alone — until Ari.

Ari is the AI health advocate that actually does the work (tracking symptoms, drafting appeals, reading labs, spotting what's coming) so you're not carrying it alone.

This is just one story from a recent Ari user and we’d love for you to experience the relief, too.

We just got our first 25 spots for Ari — And here's the best part: claim one of the 25 spots and you get six months of Ari premium, free. First come, first served. 💛

Grab your spot — it takes about a minutes 👉 www.citizen.health/join/cri-du-chat

Citizen Health

08/02/2026

🎉 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

06/09/2026

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 of 2026.

If you’re interested in participating, please contact: [email protected]
Your voice can help shape the future of care and research 💙
COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental

06/04/2026

The Cri du Chat Research Foundation and COMBINEDBrain - Outcome Measures and Biomarkers for Neurodevelopmental will be collecting research specimens during the 5p- Society Conference in San Antonio.

We are currently seeking participation from individuals with genotype-only deletions and mosaic 5p- syndrome. Every sample collected helps strengthen the research foundation needed to better understand 5p- syndrome, identify biomarkers for the disorder, and accelerate the path toward disease-modifying therapies.

📅 Saturday, July 25
⏰ 7:30 AM – 12:30 PM
📍 Marriott Hotel, San Antonio

Every family that chooses to engage in research plays a valuable role in moving the field forward. We are profoundly grateful to the 5p- syndrome community for standing together in support of discovery, hope, and progress. Every contribution helps move us closer to a brighter, more equitable future for individuals and families living with 5p- syndrome

05/05/2026

Today is International Cri du Chat Awareness Day, a special day to recognize, celebrate, and honor the incredible individuals and families in the Cri du Chat/5p- Syndrome community around the world.

Today, we celebrate the strength, resilience, joy, and determination of every person living with 5p- syndrome. We celebrate the parents, siblings, grandparents, and all caregivers who show up every day and work tirelessly to help individuals with 5p- syndrome live their best lives

Most of all, we celebrate a community that continues to inspire hope through love, perseverance, and unity.

At the Cri du Chat Research Foundation, our mission is rooted in that hope. We are committed to advancing research, deepening the understanding of 5p- syndrome, and helping accelerate the development of meaningful treatments that can improve lives.

We also believe this community deserves equity in scientific progress and access to the same innovation, urgency, and treatment development seen across other conditions. Families deserve answers, progress, and the promise of a brighter future.

In honor of International Cri du Chat Awareness Day, we are also proud to host our Annual Charity Golf Outing on May 12 to raise critical funds for research. This special event helps fuel the science, advocacy, and momentum needed to create real change for this community.

We invite you to support by becoming a sponsor or making a direct donation. Learn more here: https://secure.qgiv.com/for/cdcrfgolfouting/event/golf2026/

International Cri du Chat Awareness Day is also a reminder that rare does not mean alone. To every family on this journey: we see you, we support you, and we stand with you.

Happy International 5p- Syndrome Awareness Day!

This full-day charity golf tournament supports the Cri Du Chat Research Foundation with a complete schedule of activities from 9:30 AM to 6:30 PM. The event features morning check-in and brunch, followed by a golf scramble tournament with sh***un start, and concludes with "The Giving Green Ceremony"...

04/14/2026

Natural history studies are an important way to help researchers better understand 5p- syndrome and support future research.

The Cri-du-Chat Research Foundation collaborates with two studies that families can participate in from home: Citizen Health and Simons Searchlight. Both platforms prioritize privacy and data security, with de-identified data and protections in place for participants.

Learn more and sign up using the links in our bio.

04/01/2026