Search Results: MCH Organizations

Annotation: The AIDS Alliance for Children, Youth, and Families, founded in 1994 as the AIDS Policy Center for Children, Youth and Families, is a national organization focused on the needs of children, youth, and families living with, affected by, or at risk for HIV and AIDS. Since its founding, the organization has been an advocate for children, youth, and families affected by HIV/AIDS. While continuing with policy analysis and advocacy activities, the organization has expanded its mission to include education and training for consumers and providers. The organization offers local and national training, technical assistance, and publications.

Keywords: AIDS, Advocacy, Children, Education, Families, HIV, Listservs, Training, Youth

Annotation: The Alaska Health Education Library Project (AHELP) is an electronic clearinghouse of current health promotion and health education resources that are specific to and available in Alaska. It contains information on health promotion programs, projects and materials, key contact people in health promotion program areas, a calendar of health observances and health promotion training and events, and resource organizations at the state and national level. AHELP has an online discussion list (listserv) for professionals involved in health education and health promotion.

Keywords: Alaska, Clearinghouses, Health sciences libraries, Listservs, State agencies

Annotation: The American Council of the Blind (ACB) is a national membership organization established to promote the independence, dignity, and well-being of blind and visually impaired people. Members are blind, visually impaired, or fully sighted people from all walks of life. ACB helps to improve the lives of blind Americans by working to enhance civil rights, employment, rehabilitation services, safe and expanded transportation, travel and recreation, accessibility, and Social Security benefits. Frequently ACB works in coalition with other disability groups in this regard. ACB hosts an annual convention, bringing together blind and visually impaired people for programs, product exhibitions, and social events. Services to consumers include referrals, publications, and an open list service. ACB publishes a magazine, "The Braille Forum," which is available in braille, large print, cassette, computer disk, online and e-mail. The magazine is free of charge to individuals living in the United States; schools, organizations, libraries, companies, and those living overseas pay $25 per format per year.

Keywords: Blindness, Listservs, Vision disorders

Annotation: The American Institutes for Research conduct and apply the best behavioral and social science research and evaluation towards improving peoples’ lives, with a special emphasis on the disadvantaged. Within the United States and internationally, AIR produces improvements in education, health, and the workforce; addresses the needs of individuals, organizations, and communities; designs and advances statistical and research methods; helps practitioners and organizations to adopt evidence-based practices; and informs public understanding and policymaking by the best evidence. Topics include child welfare, cultural competence, families, juvenile justice, mental health, school violence prevention and intervention, and schools and special education.

Keywords: Collaboration, Evaluation, Information services, Listservs, Model programs, Program development, Public policy, Research

Annotation: The Center for Effective Collaboration and Practice (CECP) at the American Institutes for Research supports and promotes a reoriented national preparedness to foster the development and the adjustment of children with or at risk of developing serious emotional disturbance. To achieve that goal, the center has a policy of collaboration at federal, state, and local levels that contributes to and facilitates the production, exchange, and use of knowledge about effective practices. The center is funded by the U.S. Department of Education's Office of Special Education Programs and receives additional support from the Center for Mental Health Services, U.S. Department of Health and Human Services. Topics covered by the center include child welfare, cultural competence, families, juvenile justice, mental health, school violence prevention and intervention, and schools and special education. The center provides publications, list service discussions, information about promising practices and prevention programs that work, and links to further information.

Keywords: Adolescent mental health, Affective disorders, Child mental health, Collaboration, Information services, Listservs, Model programs

Annotation: The American Syringomyelia Alliance Project (ASAP) is a support and family networking group that provides reference information, medical articles, videotaped lectures, and a bimonthly newsletter on syringomyelia and the chiari malformations. ASAP also sponsors workshops, and a list service and holds an annual conference.

Keywords: Syringomyelia, Arnold Chiari deformity, Hydromyelia, Information services, Listservs, Post traumatic syringomyelia, Support groups, Syringobulbia

Annotation: Created in 1979, the Association for Public Analysis and Management (APPAM) is a professional organization of researchers, educators and practitioners who are active in the production, dissemination and application of analysis in the field of public policy and management. APPAM operates through its annual fall and spring conferences, a newsletter and a journal. The organization sponsors educational activities. A list service is available to members.

Keywords: Listservs, Policy analysis

Annotation: The Centers for Disease Control and Prevention (CDC), a part of the U.S. Department of Health and Human Services, is the primary Federal agency responsible for conducting and supporting public health activities in the United States, including the prevention and control of infectious and chronic disease. The primary goals of the agency are to reduce health risks during every stage of life; spearhead efforts to improve global health; ensure that the places people live, work, and play have safe, healthy environments; and prepare for emerging health threats from mental health to environmental health. The Public Inquiries Office responds to inquiries in the areas of preventive medicine, immunization, disease control, and health education. The Web site covers a wide range of health & safety topics, including diseases & conditions, emergency preparedness, environmental health, life stages & populations, healthy living, injury and violence; travelers' health, and workplace health and safety. Also included are links to data and statistics, online access to CDC's journals and other publications; and tools & resources such as an image library, podcasts, and a Body Mass Index (BMI) calculator. A Spanish-language version of the Web site is available, and some materials are available in Spanish, French, Asian languages and other languages. CDC also sponsors conferences, training seminars and workshops.

Keywords: Preventive health services, Adolescents, Data analysis, Data collection, Disease prevention, Environmental health, Federal agencies, Guidelines, Health education, Health promotion, Immunization, Listservs, Nutrition, Occupational safety and health, Online databases, Population surveillance, Publications, Safety, Spanish language materials, Spanish language website, Standards, Technical assistance, Training

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

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

Annotation: The Congenital Heart Information Network (CHIN) is an international organization that provides information, support services, and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them. Services to consumers include referrals, inquiry responses, publications, financial assistance, and reference information. Members can join online support and discussion forums via either a link provided in the membership receipt, or from the Web site. CHIN publishes a newsletter and sponsors conferences.

Keywords: Children with special health care needs, Congenital heart defects, Listservs, Support groups

Annotation: The Council of Chief State School Officers (CCSSO) is a nonprofit organization of the public officials who head the departments of elementary and secondary education in states, the District of Columbia, the Department of Defense Education Activity, and five extra-state jurisdictions including Puerto Rico and the Virgin Islands. Activities of the Council's School Health Project include providing information about HIV education, school-based pregnancy prevention, successful collaboration, and other coordinated school health programs. Publications include newsletters and reports (many can be downloaded free of charge). The Directory of Coordinated School Health Program Staff (jointly published by CCSSO, the Association of State and Territorial Health Officials, and and the Society of State Directors of Health, Physical Education, and Recreation) is a state-by-state listing of staff in state education and health agencies whose responsibilities are related to health education, physical education, counseling and psychological services, parent/community involvement, and other aspects of school health. Copies of the directory may be ordered through the Publications section of tthe CCSSO Web site

Keywords: School health, Adolescents, Children, HIV, Health education, Listservs, Prevention programs, School personnel

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 www.fraxa.org

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

Annotation: Generations United (GU) is a national membership organization focused on promoting intergenerational strategies, programs, and policies. GU represents more than 100 national, state, and local organizations representing more than 70 million Americans. GU serves as a resource for educating policymakers and the public about the economic, social, and personal imperatives of intergenerational cooperation. GU provides a forum for those working with children, youth, and the elderly to explore areas of common ground while celebrating the richness of each generation. GU produces and disseminates materials that educate the public about the value of intergenerational cooperation, and provides technical assistance and referrals to organizations and individuals. Publications include the newsletter Together, several fact sheets, Grandparents and Other Relatives Raising Children; a number of intergenerational program guides, and a state and local coalitions guide. GU sponsors training seminars, workshops, and a biennial conference. Services to consumers include access to searchable databases and a list service.

Keywords: Age factors, Generation study, Grandparents, Integenerational relations, Listservs, Public policies

Annotation: The George Washington University Center for Health Services Research and Policy is dedicated to providing policymakers, public health officials, health care administrators, and advocates with the information and ideas they need to improve access to quality, affordable health care. The center's research and policy agenda covers topics related to the structure, financing and delivery of health care services, with an emphasis on shift in the nation's health care system to managed care and its impact on underserved and vulnerable populations and those who care for them. The center provides an annual analysis of state Medicaid managed care contracts. The center was founded in 1990 and is housed within the Department of Health Policy in the George Washington University's School of Public Health and Health Services. A major portion of the center's work on Medicaid managed care is related to maternal and child health population. The center also conducts analyses on the maternal and child health delivery system, including the implementation of State Children's Health Insurance Programs (SCHIP) and Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) coverage policies. Its publications include sample purchasing specifications for Medicaid and SCHIP. Center staff provide technical assistance to state maternal and child health programs entering managed care arrangements. Services to consumers include inquiry responses, publications, reference information, searchable databases, and a list service. The center also sponsors conferences and workshops.

Keywords: Child health, Health care reform, Health policy, Listservs, Maternal health, Medically underserved, Women', s health

Annotation: The Georgetown University Center for Child and Human Development (formerly Georgetown University Child Development Center) was established over four decades ago to improve the quality of life for all children and youth, especially those with, or at risk for, special needs and their families. A division of Georgetown University's Department of Pediatrics, the Georgetown University Center for Child and Human Development is founded on an interdisciplinary approach to service, training programs, research, community outreach, and public policy. The center sponsors conferences, training seminars and workshops. Services to consumers include referrals, publications, a catalog, and access to a list service. The policy component of the Center works internationally and nationally, as well as with states and communities, to develop and implement policies and service systems that serve the child.

Keywords: Communication disorders, Congenital abnormalities, Developmental disabilities, Early childhood education, Listservs, Nervous system diseases, Neuropsychology

Annotation: The Grief Recovery Institute provides services to consumers that include referrals and publications. GRIEF publishes a catalog, sponsors training seminars and workshops, and provides a list service which is available to both professionals and consumers. Some materials are available in Spanish.

Keywords: Perinatal bereavement, Grief, Listservs, Pregnancy loss

Annotation: The Guttmacher Institute is a nonprofit corporation for research, policy analysis, and public education in the field of reproductive health. Services to consumers include publications and reference information. The institute publishes Perspectives on Sexual and Reproductive Health, International Family Planning Perspectives, The Guttmacher Policy Review, fact sheets, briefing papers, and special reports. A publications catalog is available. Some materials are available in Spanish, French, Asian, and other languages. The institute also has a list service, accessible through its Web site. The International Data Center allows users to build, download, and print custom tables, graphs, and maps using information from countries and regions.

Keywords: Pregnancy, Adolescent pregnancy, Data, Family planning, Foreign language materials, Information services, Listservs, Medical research, Online systems, Policy analysis, Prenatal care, Public education, Publications, Reproductive health, Sexuality education

Annotation: The Media/Materials Clearinghouse (M/MC) at the Johns Hopkins University Center for Communication Programs is an international resource for health professionals who seek samples of pamphlets, posters, videos, and other media/materials designed to promote public health. The clearinghouse provides access to Mediabank, a database of health communications materials; Netlinks, a database of internet health resources for public health; Photoshare, a database of health-related photographs available for nonprofit use; and Videoshare, a database of videos for public health. The M/MC also manages the Health Communications Materials Network (HCMN), an international network of professionals specializing in the development of health communication materials. HCMN serves as a forum for health communication specialists to share ideas, information, and samples of health communication materials with colleagues, and to seek advice and suggestions from others working in the field. HCMN also has an online database of clip art which can be used in developing health communication materials. The clearinghouse provides publications in both electronic and print form, and materials are available in Spanish, French, Asian, and other languages. M/MC publishes a newsletter.

Keywords: Audiovisual materials, Clearinghouses, Health promotion, Listservs

Annotation: Kids as Self Advocates (KASA), a project of Family Voices co-sponsored by the Diana, Princess of Wales Memorial Fund and the U.S. Maternal and Child Health Bureau (MCHB), is a national network made up of adolescents with special health care needs and their families and friends. KASA's mission is to educate society about issues concerning youth with disabilities and special health care needs and works to empower youth to learn how to self-advocate. KASA also assists with building support networks for youth with special needs to share information with their peers. Members of KASA serve as youth advisors to Family Voices and work to educate policymakers, medical students, physicians, and fellow students on issues such as living with special health care needs, health care transition, education, and employment. The organization publishes a newsletter, sponsors a listservice and an electronic bulletin board and offers payment to youth for Web site contributions. KASA also operates the KASA National Youth Information, Training, and Resource Center with funding from the Administration on Developmental Disabilities.

Keywords: Adolescents with developmental disabilities, Adolescents with special health care needs, Advocacy, Listservs, Peer education, Peer support programs