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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 20 (21 total).

American Network of Community Options and Resources (ANCOR)

Annotation: The American Network of Community Options and Resources (ANCOR) represents and assists private agencies that provide support and services to people with mental retardation and/or other disabilities. The network helps these agencies to appropriately meet the needs of the people they serve and to improve their quality of life. Services to families and people with disabilities include referrals, publications, and reference information. ANCOR publishes a newsletter and sponsors conferences and training seminars.

Keywords: Mental retardation, Disabilities, Information services, Support groups

Arc of the United States

Annotation: The Arc of the United States, formerly the Association for Retarded Citizens of the United States, works to prevent and ameliorate mental retardation and to improve the quality of life for children and adults with mental retardation and their families. The Arc's state and local chapters provide services or advocate for services for people with mental retardation throughout the United States. The association provides information, publications, and referrals to parents, organizations, and communities to assist them in meeting the needs of people with mental retardation.

Keywords: Mental retardation, Support groups, Information dissemination

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

Association of University Centers on Disabilities (AUCD)

Annotation: The Association of University Centers on Disabilities (AUCD) supports and promotes a national network of university-based interdisciplinary programs. Network members comprise University Centers for Excellence in Developmental Disabilities, Leadership Education in Neurodevelopmental Disabilities programs, and Intellectual and Developmental Disability Research Centers. AUCD programs serve as a bridge between the university and the community, bringing the resources of both to achieve meaningful change. AUCD’s website addresses the range of interdisciplinary network activities, including services for children, adults, and families; academic training; research; training and technical assistance; policy advocacy; program evaluation; and dissemination of best practices and new information.

Keywords: Developmental disabilities, Children with special health care needs, Fundraising, Medical research, Mental retardation, SCAN, University affiliated centers, University affiliated programs

Bethesda Communities

Annotation: Bethesda Lutheran Communities offers Christian education and residential rehabilitation services to people with mental retardation. It also offers short term and respite care, a fully accessible camp, day services, and case management. In addition to its main campus in Watertown, WI, Bethesda operates 37 community living facilities in ten states. Through its National Christian Resource Center, Bethesda offers free information and referral services nationwide, systems advocacy, resources for special religious education, staff training video modules, and workshops for religious and secular providers. Conferences and training seminars are sponsored as well. Publications include a catalog and newsletter. Some materials are available in Spanish.

Keywords: Case management Religious organizations, Developmental disabilities, Family support, Mental retardation, Respite care

Canadian Association for Community Living (CACL)

Annotation: The Canadian Association for Community Living (CACL) works to ensure that people with intellectual disabilities can live, learn, and work in integrated settings in their communities and that their rights are protected by legislation and public policy.

Keywords: Integration, Mental retardation, Public policies, Special education

Christian Reformed Church in North America, Disability Concerns

Annotation: The Division of Disability Concerns of the Christian Reformed Church seeks to promote the full participation of people with disabilities in the life of the church. The division encourages support groups and respite care, and it works with Christian service providers, support organizations, and local and national religious and professional organizations to provide referrals, information, education, and encouragement to church leaders and members of the congregation. Publications include a newsletter, Breaking Barriers. Some conferences and training seminars are offered.

Keywords: Clergy, Disabilities, Inclusion, Mental retardation, Religious organizations

Eunice Kennedy Schriver National Center for Community of Caring

Annotation: The Eunice Kennedy Schriver National Center for Community of Caring is a K-12, whole-school, comprehensive character education program designed to create a positive learning environment where all students, including those with intellectual and physical disabilities, are respected, challenged to grow morally, taught to make healthy life decisions, and encouraged to participate in every aspect of school life. Through this, the program addresses destructive attitudes that lead to substance abuse, teen pregnancy, , and dropping out of school. The program includes (1) training teachers and other staff, (2) incorporating the values of caring, respect, responsibility, trust, and family into all curricular areas, (3) conducting student forums on issues vital to young people, (4) involving the family and community more fully in school life, and (5) providing opportunities for students to plan and carry out community service projects. The program sponsors a national conference and publishes a newsletter and training materials. It was founded by the Eunice Kennedy Shriver and the Joseph P. Kennedy, Jr. Foundation.

Keywords: Adolescent pregnancy, Character, Community programs, Mental retardation, Moral values, Prevention programs, Social values, Special health care needs

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Annotation: The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) -- renamed by Congress in 2008 in honor of the Institute's founder -- supports and conducts research on topics related to the health of children, adults, families, and populations. The mission of the NICHD is to ensure that every person is born healthy and wanted; that women suffer no harmful effects from reproductive processes; that all children have the chance to achieve their full potential for healthy and productive lives, free from disease or disability; and to ensure the health, productivity, independence, and well-being of all people through optimal rehabilitation. Areas of emphasis include: events that happen prior to and throughout pregnancy and childhood, including infertility, pre-term birth, birth defects, developmental disabilities, and human learning and behavior; human growth and development across the lifespan, including nutrition, developmental biology, and congenital diseases; reproductive health and education about reproductive practices, including disorders affecting fertility and infertility, contraception, and sexually transmitted diseases/HIV/AIDS; and medical rehabilitation interventions for those affected by disabilities, including technology and assistive-device development, intervention evaluation, and health promotion and prevention of disabilities. The Center for Research for Mothers and Children, the Center for Population Research, the National Center for Medical Rehabilitation Research, the Division of Epidemiology, Statistics, and Prevention Research, and the Division of Intramural Research comprise the NICHD. The Institute offers a wide range of materials for various audiences, from researchers to parents; many publications are available in Spanish.

Keywords: Adolescent health, Child health, Congenital abnormalities, Infant health, Infant mortality, Maternal health, Medical research, Mental retardation, National Institutes of Health, Nutrition, Population dynamics, Publications, Reproductive health, Spanish language materials, Training

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


Annotation: NADD: The National Association for the Dually Diagnosed, is an association for persons with developmental disabilities and mental health needs working to bridge the gap between providers of services for people with mental retardation and for people with mental illness. Members are professionals, parents, concerned citizens, and service organizations interested in program development, funding, policy, clinical, and research activities related to dual diagnoses. The association maintains information and referral services, conducts regional and local workshops and symposia, sponsors an annual national conference, biannual international congress, and publishes a catalog and a bimonthly journal

Keywords: Mental disorders, Developmental disabilities, Information services, Mental retardation

National Apostolate for Inclusion Ministry (NAfIM)

Annotation: The National Apostolate for Inclusion Ministry (NAFIM) formerly The National Apostolate with People with Mental Retardation, promotes participation of individuals with mental retardation in the Roman Catholic Church. It works to enhance the personal growth and well being of people with mental retardation through involvement in their lives, and it advocates to draw public attention to the spiritual, interpersonal, and other contributions made to society by people with mental retardation. Services to consumers include referrals, programs and publications. NAFIM publishes a newsletter and online journal, provides networking opportunities around the country, sponsors workshops for parishes, dioceses and seminaries, and sponsors summer conferences.

Keywords: Mental retardation, Clergy, Health promotion, Information services, Religion, Religious organizations, Spanish language materials

National Association of State Directors of Developmental Disabilities Services (NASDDDS)

Annotation: The National Association of State Directors of Developmental Disabilities Services (NASDDDS), formerly the National Association of State Retardation Program Directors, represents the interests of state program officials in the development and implementation of federal government programs. The association provides technical assistance to state programs and facilitates the exchange of information between states on the most advanced and efficacious methods of providing care and training for people with intellectual and other developmental disabilities. Services to consumers include referrals, publications, and reference information. Publications include reports, special studies, and several newsletters. The association also sponsors conferences.

Keywords: Mental retardation, Developmental disabilities, Information services, State programs

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

President's Committee for People with Intellectual Disabilities (PCMR)

Annotation: The President's Committee for People with Intellectual Disabilities, formerly the President's Committee on Mental Retardation, advises the president and the secretary of health and human services on issues related to programs and services for people with mental retardation. The committee evaluates the adequacy of current practices and programs for people with mental retardation, provides referrals, sponsors conferences, coordinates federal agency activities in mental retardation, and promotes research. Publications include an annual report to the President.

Keywords: Advocacy, Mental retardation

Special Olympics (SO)

Annotation: Special Olympics (SO) is an international organization that promotes understanding, acceptance, and inclusion between people with and without intellectual disabilities through year-round sports training and athletic competition and other related programming. SO provides children and adults with intellectual disabilities continuing opportunities to realize their potential, develop physical fitness, demonstrate courage, and experience joy and friendship. Resources include research reports, an e-newsletter, a fellowship program, and schools and youth outreach. SO also offers free health screenings and health information at local, regional, and World Games. SO's Project Unify is a school-based initiative in the United States that focuses on social inclusion, bringing youth with and without intellectual disabilities together through sports and related activities.

Keywords: Physical fitness, Children with special health care needs, Chronic illnesses and disabilities, Developmental disabilities, Inclusive schools, Information services, Mental retardation, School health programs, Sports

The American Association on Intellectual and Developmental Disabilities (AAIDD)

Annotation: The American Association on Intellectual and Developmental Disabilities (AAIDD), formerly the American Association on Mental Retardation, is an organization of professionals working in the field of intellectual and developmental disabilities. Through its annual conferences at the national, regional, and state levels, the association offers workshops and seminars on topics related to serving people with mental disabilities, some for continuing education credits. The association provides referrals to consumers and produces a variety of publications for professionals, including two journals.

Keywords: Developmental disabilities, Mental retardation


Annotation: VOR (formerly known as Voice of the Retarded, Inc) is a national organization advocating on behalf of the well-being of individuals with mental retardation, wherever they may reside. Members, located in all 50 states, are primarily parents and family members of individuals with severe or profound mental retardation, parent groups, and providers of local support to these families. VOR works to preserve the family choice and quality in all care decisions, and , therefore, opposes efforts by professionals and other national advocacy groups seeking to eliminate developmental centers as one option of care in a full continuum of quality care options. Services provided to consumers include referrals, publications, and reference information. Individual/family membership dues are $25 per year. Members receive a quarterly newsletter, access to VOR's extensive network of concerned individuals across the country, and daily advocacy accomplishments. The organization also sponsors conferences.

Keywords: Mental retardation, Special health care needs

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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.