The mission of AGENDA is to improve outcomes of individuals with all forms of autism by fostering a genetics-first approach to autism research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with autism.
Members
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Autism Science Foundation - partner
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.
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ADNP Kids Research Foundation
The ADNP Kids Research Foundation is the world's first non-profit organization to fund research, publish papers and promote awareness for ADNP Syndrome. Their mission is to advance the awareness and understanding of ADNP Syndrome / Helsmoortel – Van Der Aa Syndrome (ADNP) by supporting research for treatments and drug development, increasing awareness and scientific understanding, promoting individualized specialty care and protocol, supporting families and providing information to help all individuals with ADNP realize their full potential and have a better quality of life.
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Angelman Syndrome Foundation
The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.
Autism Speaks - partner
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
Bridge the Gap – SYNGAP Education and Research Foundation (501(c) 3) is a non-profit organization whose mission is to serve, educate and fund research for families coping with the effects of SYNGAP1 mutations. Bridge the Gap-SYNGAP mission is to improve the quality of life for people affected by SYNGAP1, provide family support, accelerating research and raising awareness so that every family and every child with SYNGAP1 can provide information that can guide us to a cure.
CureSHANK
It is the mission of CureSHANK to accelerate the development of cures and treatments for Shankopathies through research. The founders of CureSHANK are parents of children affected by Phelan-McDermid Syndrome [a shankopathy disorder], who believe that a better life for our children is within reach. CureSHANK works towards this goal through funding targeted research and holding scientific meetings to connect diverse stakeholders.
DDX3X Foundation
The DDX3X Foundation is an international nonprofit organization founded in 2015 to aid in the process of finding a treatment or a cure for DDX3X Syndrome. As part of our mission, the foundation will support existing research, education, and treatment programs focused on DDX3X Syndrome. The foundation has three primary functions: support research, connect families, and raise awareness. Formed by parents of children with DDX3X Syndrome, we understand the challenges associated with raising a child with DDX3X Syndrome. Many of the families affected by DDX3X Syndrome went years without knowing the cause of their child’s delays. We exist to connect and support you.
Dup15q Alliance - partner
Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome
DYRK1a Syndrome
DYRK1A Syndrome US is non profit 501c3, tax exempt organization with a main purpose of improving the quality of life for those affected by DYRK1A Syndrome. Through support, education, research and collaboration we are working to improve family life, daily living and clinical care for those with DYRK1A Syndrome. In doing so we also improve the lives of their caregivers and their families. People with this mutation experience Microcephaly, Developmental Delay, Intellectual Disability, Speech delay, Seizures, Autism, Feeding difficulties, Behavioral differences, Vision Abnormalities
FamilieSCN2A Foundation - partner
The FamilieSCN2A Foundation is an organization created by parents of children diagnosed with Epilepsy and Autism as a result of a change in the SCN2A gene. Our mission is to improve the lives of those affected by SCN2A disorder through clinical research, effective treatments, public awareness, early detection, patient advocacy, and family support.
Foundation for Prader-Willi Research
PWS is a complex and challenging disorder, but that does not mean that there is no hope. Treatments such as growth hormone therapy have already radically changed the face of PWS. At FPWR, we believe that there is much knowledge yet to be gained through PWS research – knowledge that will lead to significant medical breakthroughs that will help our loved ones. By supporting PWS research, you will help us find effective treatments and, eventually, a cure for PWS. Our children deserve nothing less!
FOXG1 Research Foundation
FOXG1 is one of the first and most critical genes in brain development. Formerly called Brain Factor 1, it’s a transcription factor that “turns on” proteins needed for other genes to work properly. Neuroscientists believe that understanding Foxg1 could help solve many brain disorders affecting millions of people, including autism, schizophrenia, Alzheimer’s, brain cancers, and more.
FRAXA Research Foundation - partner
Founded in 1994, FRAXA is a nonprofit, tax-exempt organization based in Newburyport, Mass. Solely committed to finding a cure for fragile X, FRAXA has funded more than $25 million in biomedical research, yielding discoveries that are changing the lives of families coping with fragile X. Along with funding research, FRAXA runs scientific meetings, advises pharmaceutical companies large and small, and provides education on college campuses, community settings, and international conferences.
ID Define
The mission of ID Define is to cure Kleefstra Syndrome and in doing so, target intellectual disabilities as a whole. In order to do so, the organization will support research programs and therapeutics targeting KS, creating and improving standardization of clinical care, and community outreach.
International Rett Syndrome Foundation
At Rettsyndrome.org, our mission is to accelerate full spectrum research to cure Rett syndrome and empower families with information, knowledge, and connectivity. We advocate and raise awareness about Rett syndrome so the scientific and medical community, policymakers, educators, caregivers, and the general public can more thoroughly know, understand, and be motivated to help the research efforts and individuals living with Rett syndrome on a daily basis.
Koolen DeVries Syndrome Foundation
Koolen-de Vries Syndrome is genetic syndrome involving the 17th chromosome and is caused by a microdeletion at 17q21.31 (including the KANSL1 gene) or is caused by a change or mutation of the KANSL1 gene. The microdeletion or the KANSL1 mutation causes developmental delays, learning difficulties and can cause a number of other health concerns.
Malan Syndrome Foundation
The mission of the Malan Syndrome Foundation is to improve the lives of individuals and families affected by Malan syndrome in the global community through support, outreach and research: Provide a broad network of support to families affected by Malan syndrome and help advance access to a diagnosis; Promote knowledge development, awareness and sharing of information; and Explore research pathways to treatments and cures, as well as enhance understanding of Malan syndrome and related disorders.
PACS1 Syndrome Foundation
The goal of the PACS1 Syndrome Research Foundation is to find a treatment for PACS1 syndrome. Children with PACS1 syndrome will be dependent life-long on caregivers. They have intellectual disabilities, global developmental delays, epilepsy, autism, and significant language impairments. All children with PACS1 Syndrome have the same exact change in the PACS1 gene making it extremely unique and more easily curable relative to other genetic conditions.
Phelan-McDermid Syndrome Foundation - partner
It is the mission of the Phelan-McDermid Syndrome Foundation to improve the quality of life of people affected by PMS worldwide by providing family support, accelerating research and raising awareness.
​To accomplish this mission, there are specific values that we believe in and will use to justify whether what we do is in the best interests of those affected by Phelan-McDermid Syndrome. Those values are respect, compassion, community, and stewardship
Pitt Hopkins Research Foundation
The Pitt Hopkins Foundation is committed to accelerating progress toward effective treatments and ultimately a cure for PTHS, by directly funding the most promising research. The mission of the Pitt Hopkins Research Foundation (PHRF) is to support research dedicated to finding a treatment, and an eventual cure for Pitt Hopkins Syndrome and other similar disorders. The PHRF is also dedicated to supporting the Pitt Hopkins community with resource recommendations, parental support, and the latest medical information. It is caused by a mutation of Tcf4 which is also linked to schizophrenia, autism, Fuchs corneal dystrophy, and liver disease. The study of this important gene could have wide-reaching effects for Pitt Hopkins and beyond. Even though the cause of PTHS is known, there are currently no pharmaceutical treatments available for this disorder.
Project 8p Foundation
Project 8p Foundation is a 501(c)(3) non profit organization established to accelerate the discovery of treatments for chromosome 8p disorders with a translational research program and a standard of care to empower meaningful lives in a unified community today. People with genetic mutations on chromosome 8P show” Global Developmental Delays, Intellectual disabilities, Seizures (epilepsy), Autism, Apraxia (Speech problems) Sensory processing disorder Motor planning difficulties Visual conditions Growth deficiency Feeding and digestive challenges High (hypertonia) and low (hypotonia) muscle tones Musculoskeletal issues such as hypermobility (lax joints), Mild craniofacial differences and Sleep disorders
Rett Syndrome Research Trust - partner
The mission of the Rett Syndrome Research Trust (RSRT) is to encourage and support scientific research that will lead to effective treatments and, ultimately, a cure for Rett syndrome, a severe neurological disorder that afflicts more than 350,000 girls and women around the world, including at least 16,000 in the U.S.
Ring14
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.
SETBP1 Society
SETBP1 Society was originated and fueled by parents with children with SETBP1 disorder. Their mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.
Simons Searchlight - partner
Simons Searchlight is on a quest to accelerate the genetic science of autism and related disorders. We want more answers. We want more progress. We are a partnership of leading scientists, researchers, and families. Simons Searchlight believes the only way to make meaningful advances is to do it together. Families know the steps they have taken on their journey and how their lives have been affected. Scientists know how to transform that knowledge into the most cutting edge research.
SMCIA Foundation
SMC1A Foundation is a Patient-led Organization.
These group of girls have X-linked truncating variants in the SMC1A gene causing Loss of Function in gene expression. This results in Developmental Impairment in all, and Refractory Epilepsy and Medical Challenges in the majority of our kids.
The Wolverine Foundation
The Wolverine Foundation serves to advance research and discover novel therapeutic approaches to treat the neuro-developmental disease caused by genetic variations in the gene MAPK8IP3. The Foundation aims to accomplish these goals by supporting a team of researchers to: 1) investigate disease mechanisms and novel therapeutic approaches associated with MAPK8IP3 genetic variants and 2) manage a diverse portfolio of research projects that encourages scientific collaboration to more directly connect academic research, drug discovery and clinical development. Our activities extend from exploratory biology to the identification and validation of therapeutic targets, and from drug discovery and development to clinical studies and trials
Collaboration partners
