About the Consortium

Members
History
Activities

Members

The Down Syndrome Consortium includes the following members:

NIH Working Group logo National Institutes of Health (NIH) Down Syndrome Working Group
 
American Academy of Pediatrics logo American Academy of Pediatrics External Web Site Policy
 
American Association on Intellectual and Developmental Disabilities logo American Association on Intellectual and Developmental Disabilities External Web Site Policy
 
Association of University Centers on Disabilities logo Association of University Centers on Disabilities External Web Site Policy
 
Down Syndrome Affiliates in Action logo Down Syndrome Affiliates in Action External Web Site Policy
 
Down Syndrome Medical Interest Group logo Down Syndrome Medical Interest Group External Web Site Policy
 
Global Down Syndrome Foundation logo Global Down Syndrome Foundation External Web Site Policy
 
International Mosaic Down Syndrome Association logo International Mosaic Down Syndrome Association External Web Site Policy
 
Jérome Lejeune Foundation logo Jérome Lejeune Foundation External Web Site Policy
 
Lumind Foundation logo Lumind Foundation External Web Site Policy (formerly the Down Syndrome Research and Treatment Foundation)
 
National Down Syndrome Congress logo National Down Syndrome Congress External Web Site Policy
 
National Down Syndrome Society logo National Down Syndrome Society External Web Site Policy
 
Research Down Syndrome logo Research Down Syndrome External Web Site Policy
 
Special Olympics International logo Special Olympics International External Web Site Policy

 

Melissa Parisi, M.D., Ph.D., NICHD Intellectual and Developmental Disabilities Branch Chief, serves as the chair of the Consortium. Lisa Kaeser, J.D., Director of the NICHD Office of Legislation and Public Policy, is the executive secretary of the Consortium.

History

In early 2006, the NIH Director asked the NICHD to lead the formation of a Down Syndrome Working Group that would include scientists from across the NIH. The Working Group was charged with coordinating ongoing research already supported by the NIH related to Down syndrome, and to enhance new, NIH-supported research efforts.

The Working Group, with input from the outside scientific and family communities and at the request of Congress, created the NIH Research Plan on Down Syndrome in 2007 to focus on genetic and neurobiological research relating to the cognitive dysfunction and the progressive late-life dementia associated with the condition. The plan aimed to build upon ongoing NIH-supported research on Down syndrome, reflect the changing lives of the individuals and families affected, and take advantage of emerging scientific opportunities.

After several years of working with scientific and family communities to achieve the various goals of the plan, the NIH created the Down Syndrome Consortium to foster communication and idea-sharing among the NIH, individuals with Down syndrome and their families, national organizations interested in Down syndrome, and pediatric and other organizations.

Activities

The Consortium meets two to three times each year to discuss research findings, potential collaborations, and progress in achieving the goals described in the NIH Research Plan. The Consortium members will be actively involved in evaluating and revising the NIH Research Plan later in 2013.

In addition, the NICHD is leading the effort to establish DS-Connect®: The Down Syndrome Registry to facilitate contacts and information sharing among families, patients, researchers and parent groups. Consortium members will be actively involved in outreach efforts to the Down syndrome community to encourage families to sign up for DS-Connect®: The Down Syndrome Registry.

Page Last Updated: August 25, 2014