Search Results: MCH Organizations

Annotation: The American College of Medical Genetics (ACMG) provides education, resources, and representation for the medical genetics profession. ACMG promotes the development and implementation of methods to diagnose, treat and prevent genetic disease and establishes uniform laboratory standards, quality assurance, and proficiency testing. The college develops clinical practice guidelines and produces laboratory-services directories, databases, position papers, and population screening guidelines.

Keywords: Genetics, Advocacy, Diagnosis, Genetics education, Health promotion, Preventive health services, Professional societies, Publications, Quality assurance, Resources for professionals, Standards

Annotation: Biological Sciences Curriculum Study (BSCS) is an international organization that develops curricula and conducts research to improve literacy in science. Programs are marketed through commercial publishers. Publications include a newsletter (three per year), a catalog of publications and supplementary materials.

Keywords: Biological sciences, Curricula, Genetics education, Health education

Annotation: The Genetic Alliance works to build the capacity of advocacy groups and leverage the voices of the millions of individuals living with genetic conditions. The Alliance provides a forum for the discussion of cross-disability similarities and the identification of available resources; fosters a partnership among consumers and professionals to enhance education and service for and represent the needs of individuals affected by genetic disorders; and supports networking efforts of members with government agencies, professional groups, service providers, and organizations. The Alliance also provides technical assistance to genetic support groups and disseminates information to the public on available resources and referrals. Some materials are available in Spanish. The Alliance also hosts an online roundtable for genetics and health professionals; creates listservs for organizations and groups; publishes bulletins plus a quarterly e-newsletter; hosts monthly webinar series; offers the downloadable Guide to Understanding Genetics; hosts two Wiki's (WikiGenetics and WikiAdvocacy); and maintains Disease InfoSearch -- a continuously evolving online search tool and database of advocacy organizations and resources for genetic conditions.The Alliance was founded in 1986 as the Alliance of Genetic Support Groups.

Keywords: Genetic disorders, Genetic services, Genetics, Genetics education, Online databases, Support groups

Annotation: The Genetic Science Learning Center (GSLC) at the University of Utah is an outreach education program whose mission is to help people understand how genetics affects their lives and society. The center presents information via its Web site, professional development programs for K-12 teachers, and public education programs. Information is designed for non-research audiences and is often visual in nature.

Keywords: Genetics education

Annotation: The Genetic Services Policy Project (GSPP) is working to assess the current model for genetic services delivery; explore alternative models for delivery of genetic services; and identify changes in public policies that would promote appropriate and cost effective access to a broad range of genetic services to all who might benefit from them. The assessment will include evaluating the economic, legal, cultural and policy aspects of the existing system and alternatives. In addition, GSPP will examine specific genetic service markets such as screening and testing, as well as markets for complementary services such as genetic counseling and education. The project disseminates information and posts a variety of resources on its Web site, including papers and presentations, clinical case study summaries, meeting agendas and notes, and genetic profiles of all 50 states. A recommended reading list (with links to full-text articles) is provided as well. GSPP is a collaborative effort, supported by the U.S. Maternal and Child Health Bureau, the Washington State Department of Health, and the University of Washington.

Keywords: Genetics, Assessment, Genetic services, Genetics education, Information dissemination, Service delivery

Annotation: Genetics Home Reference (GHR) is a service of the National Library of Medicine. It provides brief, lay-language summaries of genetic conditions and related genes and chromosomes. Understanding is enhanced by direct links to glossary definitions and a handbook called Help Me Understand Genetics that explains fundamental genetic concepts. Additional links to onsumer information from MedlinePlus, applicable clinical trials, and relevant patient support groups are provided. Each summary of a specific medical condition includes links to advanced information from the National Library of Medicine and other authoritative sources. A glossary and information on newborn screening are included.

Keywords: Genetic disorders, Consumer education, Genes, Genetics, Genetics education, Information services, Information sources, Rare diseases, Special health care needs

Annotation: The Genetics Society of America (GSA) includes scientists and educators interested in the field of genetics. The society promotes the communication of advances in genetics through publication of the journal Genetics and other print materials; sponsorship and hosting of gene- and genome-specific databases such as Yeast and FlyBase; and by sponsoring scientific meetings focused on key organisms widely used in genetic research. The Society also hosts an oral history series with prominent scientists, and has partnered with other organizations of science educators to develop GenEdNet.org, which provides a wide variety of tools for genetics education from pre-K through graduate school and beyond. GSA distributes career information as well.

Keywords: Genetics, Genetics education, Professional societies

Annotation: The March of Dimes (MOD) works to prevent birth defects and infant mortality through research, education, and advocacy programs. MOD's Pregnancy and Newborn Health Education Center provides information and referral services for the general public and professionals on topics such as preconception health, pregnancy, childbirth, genetics, and birth defects. MOD also produces educational materials on these and other topics such as prematurity, baby care, adolescent pregnancy, folic acid, nursing, and bereavement. A publications catalog is available, and some materials are available in Spanish. Anyone can subscribe to MOD's free electronic newsletter. MOD also sponsors the Prematurity Research Initiative, which provides funding for research into the causes of prematurity, and has developed PeriStats -- an online source for maternal, infant, and child health-related data at the state level and for many indicators at the county and national level (available at http://peristats.modimes.org/). The website can be viewed in English and Spanish.

Keywords: Congenital abnormalities, Adolescent pregnancy, Advocacy, Childbirth education, Genetic disorders, Genetics education, Infant mortality, Information services, Medical research, Patient education, Prenatal care, Preterm birth, Professional education, Public awareness materials, Spanish language materials, Spanish language website

Keywords: Congenital abnormalities, Genetic disorders, Genetics education, Prenatal care, Preterm birth

Annotation: The National Association of Biology Teachers (NABT) promotes the professional development of biology/life science educators. Services to consumers include referrals, publications, and reference information. Publications include the journal The American Biology Teacher, a monograph series, special publications on developments in biology education and innovative teaching activities for biology/life science educators, and a newsletter, News and Views. The association sponsors an annual national convention and numerous inservice workshops across the country.

Keywords: Biological sciences, Genetics education

Annotation: The National Coalition for Health Professional Education in Genetics (NCHPEG) promotes health professional education and access to information about advances in human genetics. NCHPEG develops educational tools and resources to facilitate the integration of genetics into the health professional practice and works to strengthen and expand the interdisciplinary community of organizations and individuals committed to coordinated national genetics education for health professionals.  NCHPEG provides technical assistance to individuals, organizations, and health professionals who have questions about genetics or genetics education; supports cultural diversity initiatives; and provides information on contracts and grants. The coalition also maintains the search engine and listserv, Genetics Resources on the Web (Grow), and a clearinghouse of genetics education materials. Resources are available in Spanish.

Keywords: Genetics, Biological sciences, Clearinghouses, Genetics education, Health education, Information sources, Interdisciplinary approach, Online databases, Publications

Annotation: The National Coordinating Center for the Genetics and Newborn Screening Regional Service Collaboratives (NCC) -- which was established along with seven Genetics and Newborn Screening Regional Collaborative Groups (RCs) in 2004 -- is part of the federal initiative to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services. The NCC provides infrastructure, coordination, technical assistance, and resources to the various RCs. The coordinating center also facilitates local projects and uses communities identified through the RCs to pilot test materials for policymakers, health professionals and families. Technical assistance is provided to the RCs in the areas of telemedicine, legal issues, and the assessment of state and federal legislation that may affect the delivery of genetic and newborn screening services. NCC's webcasts on topics such as financing of newborn screening and genetic services and the use of telegenetics to increase access to services are archived at www.mchcom.com. Other online resources include a page for parents and families; resources for professionals; links to glossaries and reference services; newsletters, reports, and other publications; and advocacy and support group information. The NCC is formed as a partnership with the Genetic Services Branch of the Maternal and Child Health Bureau (HRSA) through a cooperative agreement with the American College of Medical Genetics (ACMG). The NCC is organized around a central office and an Advisory Committee which includes the seven RCs and representatives of national organizations that serve as resources to the NCC and the RCs.

Keywords: Genetics, Resource centers, Federal programs, Genetic services, Genetics education, National MCH resource center, Neonatal screening, Newborn infants, Public health, Regional genetics networks

Annotation: The Office of Rare Diseases (ORD) at the National Institutes of Health provides information on rare and genetic diseases to patients, families, researchers, healthcare providers, and the general public. ORD works to stimulate and coordinate research on rare diseases and serves as a liaison for the National Institutes of Health with federal, nonfederal, national, and international organizations concerned with research and treatment of rare and genetic diseases. Also, ORD cosponsors a genetic and rare diseases information center together with the National Human Genome Research Institute. ORD sponsors scientific workshops on specific rare diseases or disease groups, and co-sponsors together with NIH Institutes and Centers the Rare Diseases Clinical Research Network (RDCRN) -- a cluster of consortia working in collaboration to develop new approaches to diagnosis, prevention, and treatment. The Web site provides links to research studies, patient advocacy groups, clinical trials, ORD-sponsored scientific conferences, and genetics information and services.

Keywords: Rare diseases, Genetics, Health education, Information dissemination, Information sources, Research

Annotation: The National Society of Genetic Counselors (NSGC) promotes the genetic counseling profession as a recognized and integral part of health care delivery, research, education and public policy. It offers local and national continuing education opportunities and serves as a forum for discussion of issues relevant to human genetics and the genetic counseling profession. The organization sponsors conferences for professionals, publishes a quarterly newsletter and bi-monthly journal. Referrals are available to consumers on the website.

Keywords: Genetic counseling, Continuing education, Genetic counselors, Genetics

Annotation: New York State Genetic Services Program and Newborn Screening Program coordinates state grants to comprehensive and noncategorical clinical genetics units throughout the state. This assures that all residents of the state can access genetic diagnosis, testing, counseling and treatment regardless of their social, economic, or geographic circumstances. The state newborn screening program tests all newborns born in New York State for 40 congenital diseases and HIV. Program follow-up assures that all children identified by the program are properly referred to specialty care centers. These centers are approved by New York state to provide quality medical care to all children identified by the program. Educational materials are available in Spanish, French, Chinese, and other languages.

Keywords: Regional genetics networks, Genetic counseling, Genetic services, Genetics, Health education, Medical research, New York, Spanish language materials, Virgin islands