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: 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 Chromosome 9p- Network, previously known as Support Group for Monosomy 9p, links families of children with monosomy 9p, provides nonclinical information annually on the development of children with monosomy 9p, and promotes research on the ninth chromosome. Other names for this syndrome include ring 9, mosaic 9p, 9pminus, 9p-, and Alfis Syndrome.

Keywords: Chromosome abnormalities, Family support services, Genetic disorders, Monosomy 9p, Parent groups

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 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 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 screening, Genetic services, Hawaii, Neonatal screening

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 Hereditary Hemorrhagic Telangiectasia Foundation International (HHT), founded in 1991, fosters exchange of information on this rare genetic blood vessel disorder (also known as Osler-Weber-Rendu syndrome) among patients, physicians, researchers, genetic counselors, organizations, and the public. The foundation raises funds for genetic and clinical research, maintains a registry of affected families, provides individualized information, and supports scholarships, research grants, and annual conferences. Publications include a newsletter and several brochures. Materials are available in Spanish, French, Italian, Dutch, German, and other languages. Services to consumers include inquiry responses, referrals, publications, and reference information.

Keywords: Hereditary hemorrhagic telangiectasia, Cardiovascular diseases, Family support services, Fundraising, Genetic disorders, Hereditary diseases, Information services, Information services, Medical research, Patient identification

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

Annotation: The Mountain States Genetics Regional Collaborative (MSGRC) -- formerly the Mountain States Genetic Network -- is a consortium of providers and consumers of genetic services in Arizona, Colorado, Montana, New Mexico, Texas, Utah, Wyoming, and Nevada. Members include representatives of state health departments, university medical schools, genetic services laboratories, hospitals, private medical practices, and various consumer organizations. The group is a regional network that provides a forum for problem sharing and solving, provides referrals, promotes efficient use of resources, and facilitates improvement of the quality and quantity of genetic services offered in the Mountain States region. The network maintains an online events calendar and provides links to genetics centers and resources.

Keywords: Genetics, Arizona, Colorado, Consortia, Data collection, Genetic counseling, Genetic services, Information services, Montana, New Mexico, Problem solving, Regional genetics networks, Utah, Wyoming

Annotation: The National Batten Disease Registry provides information on Batten Disease, offers referrals to local resources, and maintains a national registry. The organization also offers neurological evaluation, genetic counseling, and diagnostic testing. Services to consumers also include reference information and publications. It is a program at the Institute for Basic Research in Developmental Disabilities.

Keywords: Batten disease, Brain diseases, Genetic counseling, Information services, Nervous system diseases

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 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

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

Annotation: NERGG, Inc., formerly known as the New England Regional Genetics Group, is a consortium of providers and consumers of genetic services in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont. Members include representatives of state health departments, university medical schools, genetic services laboratories, hospitals, private medical practices, and various consumer organizations. The group is a regional network that collects data, provides a forum for problem sharing and solving, promotes efficient use of resources, and facilitates improvement of the quality and quantity of genetic services offered in the New England region. The NERGG Web site was funded in part by a grant from the Maternal and Child Health Bureau.

Keywords: Regional genetics networks, Genetic counseling, Genetic services, Genetics, Spanish language materials

Annotation: The New England Genetics Collaborative (NEGC) works to promote and improve the health and social well-being of those with inherited conditions through collaborations among public health professionals, private health professionals, educators, consumers and advocates in Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut. The primary goal of the NEGC is to assure that individuals with genetic disorders and their families have access to quality care and appropriate genetic expertise and information in the context of a medical home that provides accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective care. NEGC provides online educational materials, a regional resource directory, and links to other genetics centers. The NEGC is a partnership between the Dartmouth Hitchcock Medical Center, the New Hampshire Institute for Health Policy and Practice, and the University of New Hampshire Institute on Disability. The collaborative is supported by a cooperative agreement with the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch.

Keywords: Genetics, Consortia, Genetic services, Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut., Federal programs, Public health , Newborn infants, Neonatal screening, Genetic counseling, Regional genetics networks