Treatments exist today to improve symptoms for neurological rare diseases. There are technologies that and datasets all over the world that do not connect, should connect, and if connected, can benefit patients by informing researchers move from bench to bedside and clinicians how to diagnose, prevent, and manage care appropriately. Now imagine for rare diseases. Each person is living with no answers, no guidance on prognosis, let alone treatment. We have combined forces with other chromosomal disorders to think different about this, de-risking investment for all stakeholders and to get us closer to treatment. The Commission on Novel Technologies is a patient-driven collaborative group of stakeholders to advance novel technologies to treat people with neurodevelopmental diseases with complex copy number variants/large chromosome anomalies. https://www.cnvscommission.org/

Translational research towards treatment and advocacy of chromosome 8p disorders, a rare disease.Inviting collaboration of researchers and biopharma with a patient-led innovative approach.