Alliance for the genetic etiologies of neurodevelopmental disorders and autism
Our AGENDA
The mission of AGENDA is to improve outcomes for individuals with autism spectrum disorder 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 through:
Collaboration
We collaborate on writing grants, maintaining and expanding group registries, and addressing issues affecting people and families across conditions such as gastrointestinal and sleep difficulties.
Cooperation
Cooperation across groups and sharing of best practices, challenges, obstacles and how they were overcome. Members are transparent about their ongoing activities and what they need from each other.
Communication
Improved Communication to stakeholders around issues that are cross-cutting among genetic disorders. This includes sharing novel ways of working with families, advocacy, and holding joint information sharing sessions that are available to multiple communities
Coordination
Coordination of activities to improve clinical care for families of rare genetic disorders, regardless of the genetic diagnosis itself, starting from preclinical research and moving to clinical trials.
We work together
AGENDA partners with or develops resources and tools that help those with rare genetic conditions and NDDs facilitate science and research or find help for common problems.
AGENDA has worked on initiatives such as the Autism BrainNet, and CANDID, an initiative around GI issues, and Centers of Excellence which are university centers where experts in rare genetic conditions help families, provide training opportunities and work on scientific projects which bring together multiple rare genetic disorders.
