The Alliance of Genetic Etiologies of Neurodevelopmental Disorders and Autism is a collaboration of many patient advocacy groups representing rare genetic conditions associated with neurodevelopmental disorders, together with scientists and researchers who focus their efforts on understanding the mechanisms of these genetic variants and helping families affected by them.
The mission of AGENDA is to improve outcomes for individuals with all forms of autism by fostering a genetics-first approach to autism and neurodevelopmental disorders research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with neurodevelopmental disorders and autism.
Because neurodevelopmental disorders such as autism are a common challenge across these genetic conditions, there are likely solutions that can be shared across the community. The goal of this alliance is to support cross-gene scientific research and support families in challenges that are not unique to any of these genetic conditions.
This includes core features of NDDs as well as associated or comorbid symptoms. By focusing on rare genetic conditions related to autism, AGENDA can leverage the knowledge of multiple advocacy groups helping these families and the wider autism community.
