The path to understanding and treating genetic neurodevelopmental disorders in children can be long and fraught with uncertainty. The Child Neurology Foundation is deeply committed to supporting families on this journey, from the initial appearance of symptoms to the final diagnosis and beyond. It’s a path we know can be incredibly challenging, taking on average 30 months for families to secure a diagnosis after symptoms first emerge. It’s a timeline we believe is far too long, filled with unnecessary stress and anxiety for families eager to help their children.
This is why we are excited to highlight the work of COMBINEDBrain, a non-profit organization dedicated to reducing the time to diagnosis for these families through Project FIND-OUT. COMBINEDBrain’s mission resonates with our own, as they work tirelessly to bring about a future where the diagnostic odyssey for genetic neurodevelopmental disorders is significantly shortened, allowing for earlier interventions and better outcomes for our children.
What is Project FIND-OUT?
Project FIND-OUT stands at the forefront of this mission, offering a beacon of hope for families navigating the complexities of neurological diseases in their babies. This innovative project provides crucial
Learn more about Project FIND-OUT, which provides free genetic counseling and testing for infants between the ages of 3-12 months, and whether your baby might be eligible.
support to families, helping them understand if there is an underlying genetic cause of their child’s symptoms through early whole genome sequencing. This is not just about finding answers; it’s about contributing to a larger understanding of these disorders, benefiting the broader community of patients, families, and healthcare providers.
Families participating in Project FIND-OUT will receive a comprehensive package of support, including a free neurological assessment and whole genome sequencing for their babies, as well as genetic counseling for the family. This holistic approach ensures that families are not only informed about their child’s condition but are also guided on the next steps to take, armed with recommendations tailored to their unique situation. All these services are offered free of charge and are accessible remotely, ensuring that help is just a phone call or click away, regardless of a family’s location.
Who Can Benefit?
Project FIND-OUT is available to infants in the US aged 3 to 12 months who exhibit two or more FIND-OUT symptoms (feeding issues, issues with movement, NICU admission, developmental delay, other symptom like congenital malformation of abnormal growth, unexplained seizures, problems with muscle tone), signaling the potential presence of a neurological.
Project FIND-OUT is only open to infants in the United States between the ages of 3-12 months who have 2 or more of the below symptoms.
About COMBINEDBrain
The Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders (COMBINEDBrain) is a non-profit organization devoted to speeding the path to clinical treatments for people with rare genetic neurodevelopmental disorders by pooling efforts, studies, and data. COMBINEDBrain is a non-profit consortium led by patient advocacy foundations, working with the clinicians, researchers and pharmaceutical firms that are developing treatments for the disorders they represent.
Join Us in Making a Difference
By sharing resources like Project FIND-OUT, we aim to empower families with the knowledge and support they need during one of the most challenging periods of their lives. If you or someone you know could benefit from this program, we urge you to reach out and explore how Project FIND-OUT can make a difference in your diagnostic journey. Together, with organizations like COMBINEDBrain, we are committed to a future where every child with a genetic neurodevelopmental disorder receives the timely diagnosis and care they deserve.
For more information and to enroll in Project FIND-OUT, please visit projectfindout.org.