Commission On Novel Technologies For Neurodevelopmental CNVS

Project 8p is leading an important endeavor to establish a Commission with disorders that are similar to ours.

Mission

To establish a Commission that 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.

Mission

Patients as partners to collectively understand disease and remedies under the commonality of neurodevelopmental large chromosomal variations
open and creative brainstorming to drive innovative approaches
Culture of trust and respect
Pro-Active participation and belief that a community approach gets us to the realization of helping patients
Commitment to freely sharing and transparency of data, biomaterials, and methods to optimize and expedite impact
Cooperative approach with openness about negative results and trials, experimental shortcomings, and failures
Adapting in a dynamic manner to reassess therapeutic goals and change direction when necessary
Overcome boundaries to unfold into borders that can be crossed with regular and effective communication
Be inclusive, equitable, and encourage diversity
Ensure representation of neurodevelopmental chromosomal disorders in funding, advocacy, drug development and other regulatory agencies

Founding Patient Organizations:

Project 8p,

Dup15Q Alliance,

Ring14 USA

Neurodevelopmental copy-number variants: A roadmap to improving outcomes by uniting patient advocates, researchers, and clinicians for collective impact

With hope and perseverance, everything is possible

No one knows a disease better than those who live it every day. Patients’ active involvement is critical for accelerating the development of treatments.