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Strengthen the Evidence for Maternal and Child Health Programs

Search Results: MCH Organizations

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 11 (11 total).

Association for Children with Down Syndrome (ACDS)

Annotation: The Association for Children with Down Syndrome (ACDS) Strives to provide an environment that helps infants, toddlers, and preschool children with Down syndrome to participate in mainstream school and community activities through its early intervention and pre-school service. In addition to conducting research, ACDS provides resources, referrals, and programs for children 5-21 with Down syndrome and helps educate the community through workshops, conferences, and publications (including the bimonthly ACDS Newsletter). A catalog of publications and audiovisual materials is available, and materials are provided in Spanish. ACDS also provides residential services to young adults with Down Syndrome and other developmental disabilities.

Keywords: Chromosome abnormalities, Down syndrome, Family support services, Geneticdisorders, Information services, Medical research, Mental retardation, Public awareness materials

Chromosome 18 Registry and Research Society

Annotation: The Chromosome 18 Registry and Research Society is a nonprofit educational and research organization that locates people with chromosome 18 anomalies, educates families and the public on the prognosis and treatment of related disorders, links these families and their physicians to the research community, and encourages, conducts, and publishes research on topics that affect these families. The society maintains a database of families and interested persons, sponsors an annual conference, operates a parent network, and publishes a newsletter, Chromosome 18 Communiqué. The society sponsors a list service that is open to the public through their web site and also offers responses to inquiries from consumers.

Keywords: Chromosome abnormalities, Chromosome 18, Edwards syndrome, Genetic disorders, Health education, Listservs, Medical research, Medical research, Patient identification, Ring 18, Tetrasomy 18p

Chromosome 9p- Network

Annotation: The Chromosome 9p- Network, previously known as Support Group for Monosomy 9p, links families of children with monosomy 9p, provides nonclinical information annually on the development of children with monosomy 9p, and promotes research on the ninth chromosome. Other names for this syndrome include ring 9, mosaic 9p, 9pminus, 9p-, and Alfis Syndrome.

Keywords: Chromosome abnormalities, Family support services, Genetic disorders, Monosomy 9p, Parent groups

Chromosome Deletion Outreach (CDO)

Annotation: Chromosome Deletion Outreach, Inc. is a non-profit organization that provides support and information to families affected by rare chromosome disorders. These disorders include deletions, duplications, translocations, rings and inversions. CDO provides family matching, a quarterly newsletter, listservs and articles on rare disorders if available. Some materials are available in Spanish and French.

Keywords: Chromosomal deletion, Chromosome abnormalities, Listservs, Parent groups

FRAXA Research Foundation (FRAXA)

Annotation: FRAXA is a nonprofit private organization which funds medical research on fragile X syndrome. FRAXA offers postdoctoral fellowships of up to $40,000 per year and investigator-initiated awards (no funding limit). FRAXA also provides information for families and professionals, including publications (a newsletter), monographs, and a Web site and discussion listserve. Local parent chapters provide additional support. Grant and fellowship applications are accepted May 1 and December 1 of each year (application materials and a listing of funded projects are available at

Keywords: Chromosome abnormalities, Fragile X syndrome, Listservs, Mental retardation, X-linked mental retardation

Klinefelter Syndrome and Associates ( )

Annotation: Klinefelter Syndrome and Associates, founded in 1989, is a nonprofit educational organization that works to increase public awareness of Klinefelter syndrome and its variations and to provide support and information to people with the syndrome. They also have families with 47XYY, and 47XXX plus variants of these conditions. The organization conducts workshops; holds an annual national conference and periodic regional meetings; and provides referrals, reference information, and publications (including a brochure on Klinefelter syndrome, a list service, and a newsletter). Some materials are available in Spanish.

Keywords: Klinefelter syndrome, Chromosome abnormalities, Family support groups, Genetic disorders, Listservs

National Down Syndrome Congress (NDSC)

Annotation: The National Down Syndrome Congress (NDSC) serves as a clearinghouse on all aspects of Down syndrome and provides inquiry responses and referrals to local parent organizations, statewide organizations, and agencies serving people with disabilities. Affiliated parent groups provide local parent support and enhance public awareness of Down syndrome. Publications include Facts About Down Syndrome; Down Syndrome, a bibliography of materials on Down syndrome; and Down Syndrome News, a newsletter produced 10 times a year. Some materials are available in Spanish. The organization sponsors an annual conference and training seminars.

Keywords: Chromosome abnormalities, Down syndrome, Genetic disorders, Information services, Mental retardation

National Down Syndrome Society (NDSS)

Annotation: The National Down Syndrome Society (NDSS) provides education, research, and advocacy in its efforts to ensure that all people with Down syndrome have the opportunity to achieve their full potential in community life. NDSS maintains an Information & Referral Center which responds to questions from parents, professionals, and other interested individuals. NDSS also maintains a List Serve for parents of children with Down Syndrome, sponsors workshops and an annual conference, and produces a quarterly newsletter and educational materials about Down syndrome. Some materials are available in Spanish.

Keywords: Mental retardation, Chromosome abnormalities, Down syndrome, Genetic disorders, Information services, Public awareness materials

National Fragile X Foundation (NFXF)

Annotation: Established in 1984, the National Fragile X Foundation (NFXF) is a nonprofit organization that informs professionals, parents, and the public about the diagnosis and treatment of Fragile X syndrome. The foundation supports related research and clinical applications, organizes support groups for parents nationwide, provides referrals, holds biannual international conferences for professionals and parents, sponsors training seminars and publishes a quarterly newsletter. Some materials are available in Spanish.

Keywords: Chromosome abnormalities, Fragile X syndrome, Genetic disorders, Genetics, Biochemical genetics, Medical research, Mental retardation, X-linked mental retardation

Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)

Annotation: The Support Organization for Trisomy 18, 13, and Related Disorders (S.O.F.T.) supports and educates families and caregivers of children with trisomy 18 or 13 and related trisomy disorders. The organization provides referrals, reference information and the following publications: Trisomy 18: A Book for Families, Trisomy 13: A Book for Families, Care of the Infant and Child with Trisomy 18 and Trisomy 13 and a bimonthly newsletter, SOFT Times. SOFT also provides some Spanish materials and sponsors conferences and workshops.

Keywords: Trisomy 13, Chromosome abnormalities, Edwards syndrome, Family support services, Genetic disorders, Health education, Patau syndrome, Support groups, Trisomy 6

Turner's Syndrome Society of the United States (TSS-US)

Annotation: The Turner Syndrome Society of the United States is a nonprofit organization for women and girls with Turner syndrome and their families. The society promotes public education through television, newspapers, and a speakers' bureau, and it facilitates communication between local and state support organizations. Publications include a newsletter, and some materials are available in Spanish. TSS-US also provides chapter/support groups and sponsors workshops, training seminars, and annual conferences.

Keywords: Chromosome abnormalities, Genetic disorders, Public awareness materials, Turners syndrome, Women


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.