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Strengthen the Evidence for Maternal and Child Health Programs

Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.


Displaying records 1 through 10 (10 total).

G.I. Polyposis and Hereditary Colon Cancer Registry

Annotation: The G.I. Polyposis and Hereditary Colon Cancer Registry is one of a national network of gastrointestinal polyposis and hereditary colon cancer registries. It includes physicians, a coordinator, and other paramedical professionals who work to find families with heritable conditions, provide genetic counseling or referrals, communicate with their physicians, and educate them on the physical and emotional problems that may result from a heritable diagnosis. Publications include a quarterly newsletter, Hereditary Colon Cancer.

Keywords: Colon cancer, Familial adenomatous polyposis, Gardner syndrome, Gastrointestinal polyposis, Genetic counseling, Juvenile polyposis, Patient education, Patient identification, Peutz-Jeghers syndrome

Mountain States Genetics Regional Collaborative (MSGRCC )

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

National Batten Disease Registry

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

National Society of Genetic Counselors (NSGC)

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

NERGG, Inc. (NERGG)

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

New England Genetics Collaborative (NEGC )

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

New York State Genetic Services Program and Newborn Screening Program ( )

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

Southeastern Regional Genetics Group (SERGG)

Annotation: The Southeastern Regional Genetics Group (SERGG) is a network of providers of clinical genetic services, public health departments, consumers, and related laboratory services working together with affected individuals and their families. SERGG collects and disseminates information about genetic services, newborn screening programs, and other public health services related to genetics in the region, and supports research to promote better genetic services. The Group works to enhance the quality of genetic services in the Southeastern Region which includes the states of Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, Puerto Rico, and the Virgin Islands and to provide a forum for exchange of information among professionals who provide genetic services and the consumers of these services in the southeastern region of the United States.

Keywords: Regional genetics networks, Alabama, Consortia, Data collection, Florida, Genetic counseling, Genetic services, Genetics, Georgia, Information services, Kentucky, Louisiana, Mississippi, North Carolina, Problem solving, Puerto Rico, South Carolina, Tennessee, Virgin Islands

University of Pittsburgh , Department of Human Genetics

Annotation: The University of Pittsburgh Department of Human Genetics formerly known as the University of Pittsburgh Molecular Genetics Diagnostic Laboratory/CLSI provides information and counseling on Gaucher disease and other genetic disorders including cystic fibrosis, Fanconi Anemia, Canavan Disease, Tay Sachs. Testing, treatment, and counseling services are provided. Services to consumers also include referrals, publications and reference information. The organization publishes a journal and a newsletter, and it sponsors training seminars.

Keywords: Gauchers disease, Genetic counseling, Genetics, Metabolic diseases

Vereniging Samenwerkende Ouder en Patientenorganisaties (VSOP)

Annotation: The Vereniging Samenwerkende Ouder en Patientenorganisaties (VSOP), or the Dutch Genetic Alliance, is an umbrella organisation of about sixty national, disease-linked, parent and patient organisations, most of them concerned with genetic and/or congenital disorders. The VSOP's mission is to optimise the implications of research in the field of genetics, medical biotechnology and life sciences for both patients and the public well-being and health. The integrated participation in society of people with a hereditary disorder or a genetic predisposition is central in this mission. In addition to this, the VSOP strives to increase awareness of developments in the area of genetics and the involvement of the public and society at large, and more specifically of those people directly concerned with these disorders. The VSOP aims to arrange that all citizens will be informed about the possibilities and consequences of these developments so that well-informed, well-thought-out dialogue and decision-making can take place. Three fields of interest are central to the VSOP: community genetics, medical biotechnology and rare disorders. Attached to all three fields are ethical implications and societal awareness. VSOP fosters efforts to fulfil vital needs by offering reliable and well-balanced information for patients and public; early and accurate detection and diagnosis of diseases; highly qualified, accessible and affordable genetic services; psychosocial support and counselling of carriers, patients and parents; reflection on ethical issues; and stimulation of research into causes, prevention and treatment of genetic disease, both monogenetic and multifactorial. Services to consumers include inquiry responses and publications. Information on the Web site is primarily in Dutch, with an overview of the organization in English.

Keywords: Genetic disorders, Congenital abnormalities, Counseling, Ethics, Overseas organization, Support groups

   

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.