- Down Syndrome Consortium
The Consortium is a public–private collaboration that provides a forum for promoting the NIH Research Plan on Down Syndrome (2007) (PDF - 351 KB) and fosters the exchange of information on biomedical and biobehavioral research on the syndrome. The NIH published its revised plan—Down Syndrome Directions: NIH Research Plan on Down Syndrome (2014)—in November 2014.
- Visit About the Consortium to learn more about the Consortium and its members.
- The site's DS-Connect®: The Down Syndrome Registry page describes the Consortium's efforts to create a national patient registry.
- NICHD Intellectual and Developmental Disabilities Branch (IDDB)
The IDDB supports research and research training focused on preventing and lessening the impact of intellectual and developmental disabilities. The Branch supports biomedical, biobehavioral, and translational research in many areas related to intellectual and developmental disabilities (IDDs). Read the most recent IDDB Report to the NACHHD Council.
- Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers
This NICHD program provides core infrastructure and research support for investigators with independently funded projects to understand the causes of IDDs as well as their prevention, management, and treatment through biomedical and behavioral approaches.
- National Institute of Dental and Craniofacial Research (NIDCR)
The mission of the NIDCR is to improve oral, dental, and craniofacial health through research, research training, and the dissemination of health information. NIDCR's Practical Oral Care for People with Down Syndrome provides oral care guidance for people with Down syndrome and links to information on care strategies related to other health areas.
- Brain and Tissue Bank for Developmental Disorders
Housed by the University of Maryland, Baltimore, this human tissue repository systematically collects, stores, and distributes brain and other tissues for research. It is dedicated to the improved understanding, care, and treatment of individuals with developmental disorders.
- Jackson Laboratory Cytogenetic and Down Syndrome Models Resource
This resource maintains and distributes stocks of mouse models for Down syndrome as well as the study of chromosomal aneuploidy.
- Knockout Mouse Project (KOMP)
KOMP is a trans-NIH initiative that aims to generate a comprehensive and public resource comprised of mouse embryonic stem cells containing a null mutation in every gene in the mouse genome.
- National Down Syndrome Society (NDSS)
NDSS provides information on research resources, conferences, and award programs.
- LuMind Research Down Syndrome (RDS) Foundation
RDS works to stimulate biomedical research that will accelerate the development of treatments to improve cognition, including memory, learning, and speech, for individuals with Down syndrome. Read about the Foundation's grant application process .
- Association of University Centers on Disabilities (AUCD)
AUCD is a national network of university-based interdisciplinary centers. Members' activities include academic training, basic and applied research, program evaluation, and dissemination of best practices.
- Linda Crnic Institute for Down Syndrome
The Institute conducts basic, translational, and clinical research and provides medical care to people with Down syndrome.
- American Association on Intellectual and Developmental Disabilities (AAIDD)
AAIDD promotes research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
- Down Syndrome Medical Interest Group (DSMIG)
DSMIG hosts an annual meeting and clinical symposium for professionals who provide care to individuals with Down syndrome.
- Global Down Syndrome Foundation (GDSF)
GDSF works to improve the lives of people with Down syndrome through research, medical care, education, and advocacy.
- American Academy of Pediatrics (AAP)
AAP publishes the journal Pediatrics, which includes articles, policies, and guidelines on Down syndrome, such as Health Supervision for Children with Down Syndrome (PDF - 891 KB) and Oral Health Care for Children With Developmental Disabilities .
Please note: Links to organizations and information included on this page do not indicate endorsement from the NICHD, NIH, or HHS.