Search Results: MCH Organizations

Annotation: The 5p– Society is a parent support organization for families of children with 5p– Syndrome (also known as Cri-du-Chat and Cat Cry Syndrome). The society's mission is to encourage and facilitate communication among families having a child with 5p–Syndrome and to spread the awareness and education of the syndrome to these families and their service providers. The society works with leading genetics and medical researchers to further research efforts, and holds an annual national meeting. Publications are available to consumers. Publications include the 5p– Newsletter.

Keywords: Cri du chat syndrome, Family support services, Information services, Parent groups, Support groups, Medical research

Annotation: The Agency for Healthcare Research and Quality (AHRQ) supports research designed to improve the quality of health care, reduce its cost, and broaden access to essential services. AHRQ supports the National Guideline Clearinghouse, a public resource for evidence-based clinical practice guidelines; the National Quality Measures Clearinghouse, a public resource for evidence-based quality measures and measure sets; the Patient Safety Network, a collection of patient safety news, literature, tools, and resources; and the Effective Health Care Program, a collection of research centers working to provide evidence on health care interventions.

Keywords: Health care delivery, Safety, Clearinghouses, Clinical medicine, Foreign language materials, Guidelines, Health disparities , Health policy, Medical technology, Patient care management, Program evaluation, Referrals, Research, Research, Service delivery, Spanish language materials, State Children', Training, Treatment outcomes, s Health Insurance Program

Annotation: The Alliance for Aging Research supports and works to accelerate the pace of medical discoveries to improve the experience of aging and health. The Alliance advocates for increases in research dollars for age-related diseases and supports federal legislation that will advance medical breakthroughs. The alliance also conducts grassroots education campaigns for health professionals and the public on diseases which disproportionately affect the elderly; sponsors the Paul Beeson Physician Faculty Scholars in Aging Research Program; conducts studies and surveys that examine important medical, behavioral, and social issues associated with longevity; serves as a clearinghouse for information on the health and well-being of older people; and creates and disseminates health education materials to consumers in a variety of formats.

Keywords: , Public awareness campaigns, Advocacy, Aging, Clearinghouses, Consumer education, Fellowships, Geriatrics, Information sources, Legislation, Longevity, Medical research, Research, Studies, Surveys

Annotation: The ALS Association, previously known as Amyotrophic Lateral Sclerosis Association (ALSA), supports research on amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Association activities include research funding, patient services, public and professional education, chapter development, and the establishment of ALS clinical service centers nationwide. Services provided to consumers include referrals, publications, and reference information. Publications include manuals on managing ALS, Basic Home Care, ALS and The ALS Association, a set of five videos, Reason for Hope (a newsletter published three times a year), and Scientific Briefings (published 2–4 times a year). The association also sponsors conferences.

Keywords: Amyotrophic Lateral Sclerosis, Medical research, , Motor neuron disease, Neuromuscular diseases

Annotation: Alstrom Syndrome International (ASI) provides information, networking, and emotional support for people afflicted with Alstrom Syndrome and their families. It also serves as an information resource for physicians, researchers, and any associated professionals who have an interest in Alstrom syndrome. ASI also promotes and encourages medical research with the hope of determining the cause and finding a cure for Alstrom Syndrome and related diseases. ASI publishes a quarterly newsletter and maintains a listserv for individuals (both professionals and family members) interested in Alstrom Syndrome. Materials are available in Portuguese, German, Italian, Spanish, Swedish, Dutch, Turikish and Japanese.

Keywords: Alstrom syndrome, Medical research, Support groups

Annotation: The American Academy of Pediatric Dentistry (AAPD) advocates for policies, guidelines, and programs that promote optimal oral health and oral health care for infants, children, and adolescents, including those with special health care needs (SHCNs). AAPD’s website contains guidelines and policy statements and issues of the journal, Pediatric Dentistry.

Keywords: American Academy of Pediatric Dentistry, Child health, Children with special health care needs, Consumer education, Education, Guidelines, Medical research, Oral health, Pediatric dentistry, Professional societies, Publications, Spanish language materials

Annotation: The American Brain Tumor Association (ABTA) provides publications which address brain tumors, their treatment, and coping with the disease; nationwide resource listings of brain tumor support groups and physicians offering investigative treatments;Connections pen-pal program; a national brain tumor symposium for patients and their families; and free social service consultations. ABTA also sponsors regional Town Hall meetings across the country which focus on state-of-the-art treatment options. ABTA funds brain tumor research at institutions throughout the United States and Canada. A tri-annual newsletter, the Message Line, describes those research advances as well as other ABTA activities. ABTA also publishes booklets.

Keywords: Brain diseases, Brain tumors, Cancer, Information services, Medical research

Annotation: The American Cancer Society (ACS) is a nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer through research, education, advocacy, and service. The society provides educational materials and information for patients, their families, and professionals. Some publications are available in Spanish and in Asian languages (Chinese, Korean, and Vietnamese).

Keywords: Cancer, Information sources, Medical research, Public awareness materials

Annotation: The American Institute of Ultrasound in Medicine (AIUM) was founded in 1951 to advance the art and science of ultrasound in medicine and research. Its annual convention offers educational courses, scientific sessions, and commercial and scientific exhibits. Publications include the monthly Journal of Ultrasound in Medicine, a monthly newsletter, guidelines for ultrasound examinations, catalogs, journals, and educational videotapes. AIUM provides some Spanish materials and sponsors conferences, seminars, and workshops.

Keywords: Medical research , Prenatal diagnosis, Ultrasonography

Annotation: The American Parkinson Disease Association (APDA) funds medical research, organizes support group chapters, and provides information and referral services to patients, their families, and the public. Publications include Be Active, Good Nutrition and Coping with Parkinson Disease, Parkinson's Disease Handbook (in English and Spanish), Speaking Effectively, and a quarterly newsletter. The association also provides materials in Spanish, Italian, Chinese and Japanese languages. The association sponsors conferences. The association's West Coast office is located at 10850 Wilshire Boulevard, Suite 730, Los Angeles, CVA 90024, (800) 908-2732.

Keywords: Medical research, Support groups, Information services, Nervous system diseases, Parkinson disease

Annotation: The American Society for Bone and Mineral Research (ASBMR) is a professional, scientific, and medical society established to bring together clinical and experimental scientists involved in the study of bone and mineral metabolism. ASBMR encourages and promotes the study of this field through annual scientific meetings, publication of the Journal of Bone and Mineral Research, advocacy, and interaction with government agencies and related societies.

Keywords: Medical research, Advocacy, Clinical medicine, Conferences, Professional societies, Publications, Research perrsonnel, Scientists

Annotation: The American Speech-Language-Hearing Association (ASHA) certifies professional speech-language pathologists and audiologists and accredits graduate school programs in these areas. The association conducts research in communication disorders and provides information and referrals to speech-language pathologists and audiologists. Publications include Journal of Speech and Hearing Research, American Journal of Audiology, American Journal of Speech-Language Pathology, Language, Speech and Hearing Services in the Schools, ASHA Leader and ASHA Magazine. Some publications are available in Spanish. ASHA also sponsors conference, training seminars and workshops.

Keywords: Communication disorders, Deafness, Hearing disorders, Language, Medical research, Speech, Speech disorders, Speech pathologists, Speech pathology, Speech therapy

Annotation: The American Tinnitus Association (ATA) supports educational activities and conducts research on the treatment of tinnitus. The association offers information about self-help groups, provides referrals to professionals, maintains a tinnitus bibliography, provides materials in Spanish and publishes a quarterly magazine, Tinnitus Today. The ATA sponsors conferences and training seminars.

Keywords: Hearing disorders, Information services, Medical research, Spanish language materials, Tinnitus

Annotation: The Anxiety Disorders Association of America (ADAA) promotes research on the prevention and cure of anxiety disorders and works to improve the lives of people with anxiety disorders. The association conducts public awareness campaigns, fosters the exchange of scientific information, advocates health care system improvements, sponsors an annual conference, and coordinates a national self-help group network. Publications include educational materials and a bi-monthly newsletter, the ADAA Reporter.

Keywords: Phobias, Advocacy, Anxiety, Educational materials, Medical research, Mental health, Obsessive-compulsive disorder, Panic disorder, Post traumatic stress disorder, Public awareness campaigns

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

Annotation: The Association of Academic Health Centers (AAHC) is a national nonprofit organization of more than 100 institutions in the United States and Canada that are the health complexes of the major universities of these nations. The association works to improve health through leadership and cooperative action, to influence public dialogue on health and science policy issues, to advance education for health professionals, and to promote biomedical and health services research. The organization sponsors conferences but only by invitation.

Keywords: Public health education, Health promotion, Medical research, Professional education, Public policies

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

Annotation: The Asthma and Allergy Foundation of America (AAFA) is a nonprofit organization that works to control and find a cure for asthma and allergic diseases. The foundation supports research projects, patient and public education programs, public policy and advocacy efforts, and a network of chapters and support groups. Services to consumers include referrals, reference information, and publications. AAFA produces three bimonthly newsletters—Advance (patient education), Healthlines (for adolescents with asthma), and Leader's Link for support group leaders), and provides pamphlets, books, and videotapes on asthma and allergic diseases. A catalog is also available. Some materials are available in Spanish.

Keywords: Allergies, Asthma, Medical research, Information services, , Respiratory diseases

Annotation: The Ataxia Telangiectasia Children's Project, better known as the A-T Children's Project, was founded in late 1993 as a private, tax-exempt, non profit organization. It was formed to raise funds through events and contributions from corporations, foundations, and friends. The funds are then used to accelerate international scientific research aimed at finding a cure and improving the lives of all children with Ataxia Telangiectasia. The A-T Children's Project provides consumers with publications, reference information, and referrals. The organization also sponsors conferences, conducts workshops, and publishes a newsletter.

Keywords: Ataxia Telangiectasia, Fundraising, Medical research

Annotation: ARI is the hub of a worldwide network of parents and professionals concerned with autism. ARI was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. ARI also provides referrals and disseminates research findings to parents and others worldwide seeking help. The ARI data bank contains nearly 30,000 detailed case histories of autistic children from over 60 countries. Some materials are available in languages other than English. ARI publishes the Autism Research Review International, a quarterly newsletter covering biomedical and educational advances in autism research. ARI also sponsors conferences and training seminars.

Keywords: Autism, Developmental disabilities, Information dissemination, Medical research