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.

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

The International Foundation for CDKL5 Research began as a group of parents whose children had CDKL5 Deficiency Disorder. We came together and dared to dream of a new future for our children. With education and research, we believe a life-changing cure can be found. In 2009, we incorporated the International Foundation for CDKL5 Research as a non-profit organization. Since then, we have gone on to fund groundbreaking research and establish CDKL5 Centers of Excellence across the United States.

Founded in 1820, Indiana University includes seven campuses and two regional centers statewide. Innovation, creativity and academic freedom are hallmarks of our world class contributions in research and the arts.

Phelan-McDermid Syndrome (PMS) is a rare genetic condition caused by a deletion or variation of the terminal end of the long arm of chromosome 22 in the 22q13 region, most often including the SHANK3 gene. The Phelan-McDermid Syndrome Foundation (PMSF) was created by parent advocates and researchers to support and engage all affected by PMS.

At Axial, we are at the forefront of scientific innovation in the gut microbiome and its intersection with neurodegenerative diseases and neurodevelopmental disorders. We are dedicated to improving the lives of people with conditions such as Autism Spectrum Disorder and Parkinson’s disease by leveraging our understanding of the role of the microbiome and its impact on the nervous system.

CureSHANK has a singular purpose: To accelerate the development of treatments for Phelan-McDermid Syndrome and SHANK-related disorders. Our approach is to identify and fun projects that overcome critical barriers to successful drug development and to coordinate scientific efforts to improve efficiency and speed in the field.

IDefine is a nonprofit organization that exists to provide a central community for families affected by Kleefstra Syndrome (KS). IDefine is committed to identifying life-changing treatments & cures for those with Kleefstra Syndrome and other Intellectual Disabilities, building community and resources for families.

In our effort to improve the quality of life for those affected by the rare neurodevelopmental disorders of the 14th chromosome, such as Ring14 Syndrome, we commit to promoting and funding critical research, raising awareness of these rare disorders, and providing thoughtful support to this community.

Simons Searchlight is an international research program that is creating an ever-growing database and resource network for families with rare genetic neurodevelopmental disorders. The goal is to accelerate science and improve lives for those affected with rare genetic NDDs.