Newly diagnosed with a KDM5C variant?

You are not alone.

An estimated 300+ patients have been diagnosed with KDM5C variants globally, with many more likely undiagnosed.

Explore the resources below to get connected to our community.

Getting a rare disease diagnosis can be scary. You may feel relieved to finally have an answer, uncertain of what lies ahead, and anxious to learn everything you can. We’re here to help!

Find Support

Join the KDM5C Support Group on Facebook
Read our letter to newly diagnosed families

If you or someone you love has recently been diagnosed with a KDM5C genetic variant, you may have many questions and want to learn what comes next. KARES is here to help you find trusted information and connect with resources. Click below to explore what is known about KDM5C-related neurodevelopmental disorders and the range of symptoms families may experience.

Learn More

Newly Diagnosed FAQ
Brochure for Newly diagnosed families | Providers
Stay Informed by Signing Up for Our Contact Registry

Getting a rare disease diagnosis can be scary. You may feel relieved to finally have an answer, uncertain of what lies ahead, and anxious to learn everything you can. We’re here to help! Feel free to email info@kares.foundation with questions.

Participate in Research

Enroll in the KDM5C Data Collection Program
Read more about our research projects