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This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.

Displaying records 1 through 1 (1 total).

Cornelia de Lange Syndrome Foundation (CdLS)

Annotation: The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization which works to ensure early and accurate diagnosis of CdLS; promote research into the causes and manifestations of the syndrome; and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime. Services to consumers include referrals, publications, and reference information. Publications include Facing the Challenge: A Parents' Guide to CdLS, Facts About Cornelia de Lange Syndrome, CdLS Foundation Album, and a bimonthly newsletter, Reaching Out. Some materials are available in Spanish. The foundation sponsors a conference every other year.

Keywords: De Langes syndrome, Developmental disabilities, Parent groups

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.