For Families
Whether your child was recently diagnosed or you've been part of the 5p- syndrome community for years, this is your starting point to make the biggest impact for your family and our entire community. These three essential actions—joining research studies, fundraising, and connecting with CDCRF—work together to accelerate the path toward treatments and therapies for our children.
5p- Syndrome Resources for Newly Diagnosed Families
You Are Not Alone on This Journey
For many, the first time they hear the words Cri du Chat or 5p- syndrome is during one of the most difficult moments—when a loved one receives the diagnosis. At the Cri du Chat Research Foundation, our mission is to help ease that fear by providing clear, supportive information not only for newly diagnosed families, but also for those navigating the years ahead as their children grow and change. And to let you know that there is now hope for treatment development that could help change the trajectory of your loved one.
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Join Research Studies
Your participation accelerates research. Join natural history studies that collect medical records, survey data, and genetic information to help develop treatments for 5p- syndrome. Through secure, privacy-protected platforms, you can contribute valuable data to researchers while potentially receiving compensation when your anonymized data helps develop new therapies.
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Fundraising
Fundraising is the backbone for research leading to treatments for our 5p- syndrome loved ones. We know everyone has different circumstances—whether you're working, raising children, or managing daily life alongside caregiving. The good news? Every contribution, no matter the size, takes us closer to treatments our loved ones deserve.
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Connect with CDCRF
We're building a comprehensive database of 5p- syndrome families to help researchers identify participants for new studies and clinical trials, and to ensure you receive updates about breakthrough research and treatment opportunities. By registering with us, you'll be first to know about studies that could benefit your family member and help advance potential therapies for our entire community.
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Medical Coding
Medical coding ensures your child receives the right care and helps insurance companies understand 5p- syndrome as a complete condition, not just individual symptoms. By sharing the official 5p- syndrome code (Q93.1) with every medical provider, you'll streamline insurance approvals and contribute to valuable research that benefits our entire community.