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: The American Society of Human Genetics (ASHG) is a professional organization of human geneticists commited to becoming fluent in the language of the genome, better understanding human variation, and promoting public health. ASHG serves research scientists, health professionals, and the public by sharing research results; advocating for research support; enhancing genetics education by preparing future professionals and informing the public; promoting genetic services; and supporting responsible social and scientific policies. The society sponsors an annual scientific meeting, publishes an electronic newsletter and the peer-reviewed American Journal of Human Genetics.

Keywords: Electronic publications, Genetic services, Geneticists, Genetics, Professional societies

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 Coalition of State Genetics Coordinators (CSGC) is an organization of state and territorial genetics coordinators and others working to promote core public health functions as they apply to genetics. CSGC collects and disseminates information to promote research, education, and policy development; promotes the use of national guidelines developed for public health genetics; strengthens the skills of state genetics coordinators nationwide; promotes the accessibility of genetic health care services; and advocates for genetics in public health. The CSGC Web site includes links to state genetics sites.

Keywords: Coalitions, Genetics, Information dissemination, Public health

Annotation: The Council for Responsible Genetics (CRG) monitors and analyzes the social impact of the biotechnological industry nationwide and internationally. Members include scientists, trade unionists, bioethicists, environmentalists, public health experts, and other concerned citizens. The council raises issues for public debate, submits comments on pending regulations, provides speakers, and produces educational materials on various biotech issues. Publications include a bimonthly magazine, GeneWATCH. Since 1983, GeneWATCH has covered a broad spectrum of issues, from genetically engineered foods to biological weapons, genetic privacy and discrimination, reproductive technologies, and human cloning.

Keywords: Biotechnology, Public health, Ethics, Genetic engineering, Genetics, Legal issues

Annotation: GeneTests is an online medical genetics information resource developed for physicians, other health care providers, and researchers that includes GeneReviews (expert-authored disease reviews); an international directory of genetic testing laboratories, an internatinoal directory of genetics and prenatal diagnosis clinics, and an illustrated glossary with case examples. GeneTests is funded by the National Institutes of Health.

Keywords: Genetic disorders, Genetics

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 and Rare Diseases Information Center (GARD) -- established by the National Human Genome Research Institute (NHGRI) and the National Institutes of Health Office of Rare Diseases (ORD) -- provides free access to reliable information about genetic and rare disorders (including specific conditions and illnesses) in both English and Spanish and responds to inquiries from patients and families, health professionals, and other interested parties.

Keywords: Genetic disorders, Genetics, Information services, Rare diseases, Special health needs

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: Genetic Tools (formerly Genetics Throuth a Primary Care Lens) provides background information, teaching cases, and links to other resources, to facilitate teaching about genetics in primary care settings. This Web site was produced by the University of Washington with funding from the U.S. Maternal and Child Health Bureau.

Keywords: Genetics, Primary care, Professional training, Training materials

Annotation: The Genetics and Public Policy Center works to help policy leaders, decision makers, and the public better understand the rapidly evolving field of human genetics and its application to healthcare. To inform genetic policy decisions, the Center surveys public attitudes about genetics issues, conducts analyses of the existing regulatory landscape, monitors the transition of genetic applications into clinical practice, and posits options and likely outcomes of key genetics policies. The center provides overviews of reproductive genetic technologies (such as genetic testing, assisted reproduction, cloning, and genetic modification) and provides genetics information in the form of reports, center testimony and statements, a bibliography of publications written by staff and/or funded by the center, and a library of online videorecordings. The center also holds conferences and conducts focus groups. The center is supported by the Pew Charitable Trusts, with research funding from the National Human Genome Research Institute and the U.S. Department of Veterans Affairs.

Keywords: Genetics, Public policy, Reproductive technologies, Research

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 in Primary Care Institute (GPCI) works with primary care providers (PCPs) to increase their knowledge and skills in providing genetic-based services. The goals of the Institute include (1) mobilize a community of learners who will use quality improvement science to develop, implement, and evaluate strategies to enhance primary care providers' understanding of genetic medicine; (2) implement a strategy to address systems and policy to accelerate the provision of genetic medicine through the establishment of a technical assistance center; and (3) assess and address residency training needs in order to more fully imbed the practice of genetic medicine into the future of the PCP workforce. GPCI sponsors a webinar series for stakeholders to increase awareness, information, and education regarding the provision of genetic medicine in primary care and to improve health care providers’ understanding of their roles and the roles of others related to the provision of genetic medicine in primary care settings. The institute is a cooperative agreement between the American Academy of Pediatrics and the Health Resource and Service Administration's (HRSA) Maternal and Child Health Bureau.

Keywords: Genetic services, Genetics, Medical home, Primary care

Keywords: Genetic disorders, Genetics

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 Heartland Regional Genetics and Newborn Screening Collaborative -- formerly the Great Plains Regional Network -- encompasses the eight states of Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, and South Dakota, all working together to promote access to quality clinical genetic services, genetic testing, and public health programs for the citizens of the states within the Heartland collaborative. The collaborative works to improve access to expanded newborn screening, professional and public genetics literacy, equitable access to genetics evaluation, counseling and testing services, and cooperation between neighboring states within the region. The collaborative aims to facilitate and promote collaboration, assessment, planning, program development and evaluation, education, research and public policy activities related to these issues. The web site is designed to facilitate communication within the collaborative and to inform the collaborative of regional genetics resources, projects and events. The collaborative is one of seven Genetics and Newborn Screening Regional Collaborative Groups (RCs) designated by the Genetics Services Branch, Bureau of Maternal and Child Health, Health Resources and Services Administration in 2004.

Keywords: Genetics, Genetic services, Newborn infants, Neonatal screening, Regional genetics network, Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, Public health, Federal programs

Annotation: The Howard Hughes Medical Institute (HHMI) is a research organization that provides grants in support of science education. Publications include a series of reports on basic biomedical research for the public and for use in schools. A publications list is available.

Keywords: Cystic fibrosis, Gene therapy, Genes Genetic engineering, Genetic testing, Genetics, Grant, Muscular dystrophy, Neurofibromatosis, Philanthropy, Research

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