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Annotated Lists of Organizations on Key Topics in Maternal and Child Health

This list of 31 organizations is drawn from the MCH Organizations online database. Contact information is the most recent known to the MCH Library. To identify additional materials on this topic, search the Organizations database using our online search form.

The MCH Organizations Database lists government, professional, and voluntary organizations involved in maternal and child health activities, primarily at a national level. Information available to consumers is indicated where known.

Displaying 31 records.
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American College of Medical Genetics (ACMG)

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.

Web Site: http://www.acmg.net/

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

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American Society of Human Genetics (ASHG)

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.

Web Site: http://www.ashg.org/

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

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Center for Jewish Genetic Diseases

Annotation: The Center for Jewish Genetic Diseases (formerly the National Foundation for Jewish Genetic Diseases) at The Mount Sinai Medical Center is devoted to the study of diseases that affect Ashkenazi Jews. The Center's missions are: (1) to improve the diagnosis, treatment, and counseling of patients and their families suffering from Jewish genetic diseases and (2) to conduct intensive research to combat these inherited diseases. The Center publishes scientific articles, presents papers at national meetings, sponsors international meetings, and collaborates with other researchers in the process of making discoveries and developing therapies.

Web Site: http://www.nfjgd.org/

Keywords: Metabolic diseases, Bloom syndrome, Canavan disease, Familial dysautonomia, Gauchers disease, Information dissemination, Mucolipidosis, Niemann Pick disease, Public awareness materials, Tay Sachs disease, Torsion dystonia

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Council for Responsible Genetics (CRG)

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.

Web Site: http://www.gene-watch.org/index.html

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

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Genetic Alliance

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.

Web Site: http://www.geneticalliance.org

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

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Genetic and Rare Diseases Information Center (GARD)

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.

Web Site: http://rarediseases.info.nih.gov/Wrapper.aspx?src=asp/html/resources/info_cntr.html&PageID=4

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

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Genetic Science Learning Center (GSLC)

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.

Web Site: http://gslc.genetics.utah.edu

Keywords: Genetics education

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Genetic Services Policy Project (GSPP )

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.

Web Site: http://depts.washington.edu/genpol/about/

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

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Genetic Tools ( )

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.

Web Site: http://www.genetictools.org

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

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Genetics and Public Policy Center

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.

Web Site: http://www.DNApolicy.org

Keywords: Genetics, Public policy, Reproductive technologies, Research

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Genetics Home Reference (GHR)

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.

Web Site: http://ghr.nlm.nih.gov

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

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Genetics in Primary Care Institute (GPCI )

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.

Web Site: http://geneticsinprimarycare.org/Pages/default.aspx

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

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Genetics Society of America

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.

Web Site: http://www.genetics-gsa.org/

Keywords: Genetics, Genetics education, Professional societies

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Heartland Regional Genetics and Newborn Screening Collaborative

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.

Web Site: http://www.heartlandcollaborative.org

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

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Mothers United for Moral Support National Parent to Parent Network (MUMS)

Annotation: Mothers United for Moral Support National Parent to Parent Network (MUMS) is an organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS's mission to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. Through a database of more than 21,000 families from 56 countries, covering over 3500 disorders, very rare syndromes or conditions can be matched. Parents can then exchange valuable medical information, the names of doctors, clinics and medical resources or research programs, and provide each other with emotional support. The Network's list serve is open to anyone. MUMS networks with other organizations which do matching, thus expanding the possibilities of finding a match. MUMS also connects parents with support groups dealing with their child's specific disability or assists them in forming a group. The newsletters allow families to share and speak out about issues affecting their lives. Donations are requested for matching service and newsletter subscription - but offered free if financial need is expressed. MUMS also is acting as a clearinghouse to distribute information about Hyperbaric Oxygen Therapy (HBOT) as a treatment for brain damage.

Web Site: http://www.netnet.net/mums/

Keywords: Family support, Children with special health care needs, Disabilities, Parent groups, Parent networking, Rare diseases, Support groups

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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.

Web Site: http://www.msgrcc.org/

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

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National Coalition for Health Professional Education in Genetics (NCHPEG)

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.

Web Site: http://www.nchpeg.org

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

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National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives

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.

Web Site: http://www.nccrcg.org

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

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National Human Genome Research Institute (NHGRI)

Annotation: The National Human Genome Research Institute (NHGRI) -- originally established as the National Center for Human Genome Research -- led the National Institutes of Health's (NIH) contribution to the International Human Genome Project, which successfully completed the sequencing the human genome in April 2003. Since then, NHGRI's mission has expanded to encompass a broad range of studies aimed at better understanding the structure and function of the human genome and its role in health and disease. NHGRI supports the development of resources and technology that will accelerate genome research and its application to human health. A critical part of the NHGRI mission continues to be the study of the ethical, legal and social implications of genome research. NHGRI also supports the training of investigators and the dissemination of genome information to the public and to health professionals. Through its Genetic and Rare Diseases Information Center, NHGRI information specialists answer questions in English and Spanish from the general public, including patients and their families, health care professionals and biomedical researchers. The Web site offers a vast array of online tools for researchers and consumers, including databases, lecture series, a talking glossary of genetics terms, and downloadable publications.

Web Site: http://www.nhgri.nih.gov

Keywords: Genome project, Chromosome mapping, DNA sequencing, Ethics, Genetics, Information dissemination

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National Institutes of Health, Office of Rare Diseases (ORD)

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.

Web Site: http://rarediseases.info.nih.gov/

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

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National Newborn Screening and Genetics Resource Center (NNSGRC)

Annotation: The National Newborn Screening and Genetics Resource Center (NNSGRC) is a cooperative agreement between the Maternal and Child Health Bureau (MCHB), Genetic Services Branch and the University of Texas Health Science Center at San Antonio (UTHSCSA), Department of Pediatrics. The mission of the NNSGRC is to: 1) provide a forum for interaction between consumers, health care professionals, researchers, organizations, and policy makers in refining and developing public health newborn screening and genetics programs; and 2) serve as a national resource center for information and education in the areas of newborn screening and genetics. The NNSGRC serves as a focal point for national newborn screening and genetics activities, and provides related resources to benefit health professionals, the public community, consumers, and government officials. The center also provides technical assistance to assist states in refining their newborn screening activities and enhancing their capacity to incorporate new developments in genetics, health promotion, and disease prevention. The NNSGRC coordinates and facilitates national discussions of pertinent topics in the areas of newborn screening and genetics, assists in developing and implementing related demonstration projects of national interest., and produces annual national information reports on state and territorial newborn screening activities. The Web site provides downloadable newborn screening and disease-specific brochures in various languages, a guide to regional genetics and newborn screening collaboratives as well as state-specific contact information; and the National Newborn Screening Information System, which services as a information collection and reporting system for capturing state and territorial newborn screening information. In September 2009 it was funded to create the National Newborn Screening Clearinghouse.

Web Site: http://genes-r-us.uthscsa.edu

Keywords: Genetics, National MCH resource center, Neonatal screening, Online databases, Regional genetics networks, Resource centers

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National Organization for Rare Disorders (NORD)

Annotation: The National Organization for Rare Disorders (NORD) is a federation of voluntary health organizations and individuals dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD provides information on diseases, referrals to patient organizations, a networking program, medication assistance programs, research grants and fellowships, and advocacy on issues related to rare diseases. Publications include the NORD resource guide (5th edition, 2005) for use in offices and instititional settings; the NORD Guide to Rare Disorders, a series of booklets for physicians, and reports on specific diseases. The organization also publishes a newsletter and sponsors an annual conference.

Web Site: http://www.rarediseases.org

Keywords: Orphan drugs, Advocacy, Health education, Information services, Information sources, Medical research, Online databases, Publications, Rare diseases

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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.

Web Site: http://www.nsgc.org

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

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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.

Web Site: http://www.nergg.org

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

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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.

Web Site: http://www.negenetics.org

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

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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.

Web Site: http://www.wadsworth.org/newborn/genes/

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

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New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC )

Annotation: The New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) was established in September 2004 as one of seven regional collaboratives in the country funded by the Genetic Services Branch in the Health Resources and Services Administration (HRSA)'s Maternal and Child Health Bureau. The charge of this group is to develop a regional approach to address the maldistribution of genetic resources in the New York-Mid-Atlantic region, which includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia. The Wadsworth Center, New York State Department of Health is the lead institution for this project.

Web Site: http://www.wadsworth.org/newborn/nymac/

Keywords: Regional genetics networks, Federal programs, Genetic services, Genetics, Newborn infants, Neonatal screening, Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia., Public health

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Region 4 Genetics Collaborative

Annotation: The Regional 4 Genetics Collaborative consists of seven states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin) that have joined together to address inequities in genetics resources across the region. The Collaborative provides a forum for the participating states to share the use of available newborn screening and genetic resources with the aim of improved geographic distribution of genetics expertise throughout the region. Information and resources for health professionals and families are provided on the Web site. The Michigan Public Health Institute Systems Reform Program is acting as the lead agency for the project, which is funded by the Federal Maternal and Child Health Bureau of the Health Resources Services Administration.

Web Site: http://region4genetics.org

Keywords: Genetics, Genetic services, Regional genetics network, Newborn infants, Neonatal screening, Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin, Public health, Federal programs

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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.

Web Site: http://www.sergginc.org/

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

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U.S. Advisory Committee on Heritable Disorders in Newborns and Children (ACHDGDNC)

Annotation: The U.S. Advisory Committee on Heritable Disorders in Newborns and Children, also called the Secretary's Advisory Committee -- which was established in 2003 to review screening practices for genetic diseases -- considers the most appropriate application of universal newborn screening tests technologies, and guidelines, and makes recommendations to the Secretary of the U.S. Department of Health and Human Services on grants and projects to help states and local public health agencies improve screening counseling and health care services to newborns and children who have or are at risk for heritable disorders. The committee is supported by the Health Resources and Services Administration through its Maternal and Child Health Bureau.

Web Site: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/

Keywords: , Genetic disorders, Committees, Federal agencies, Genetic services, Screening

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Western States Genetics Services Collaborative (WSGSC )

Annotation: The Western States Regional Genetics Services Collaborative (WSGSC) is a federally funded project that seeks to improve the health of children living in the Western states who have disorders detected by the newborn screening blood test, birth defects and with other genetic disorders. WSGSC (working with California, Guam, Alaska, Hawaii, Idaho, Oregon, and Washington state) has three main goals: 1) to establish and maintain the infrastructure needed to support WSGSC activities; 2) to refine, pilot, and evaluate a regional practice model that improves access to specialty genetic services, comprehensive primary care, and care coordination for children with heritable conditions living far away from comprehensive genetics and metabolic centers; and 3) to increase the capacity of the collaborating states' and territory's public health agencies to perform their genetics-related assessment, policy development, and assurance functions. The project is a cooperative agreement funded by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Children with Special Health Needs Program, Genetic Services Branch.

Web Site: http://www.westernstatesgenetics.org/

Keywords: Genetics, Federal programs, Genetic services, Newborn infants, Neonatal sceening, California, Guam, Alaska, Hawaii, Idaho, Oregon, Washington, Public health, Regional genetics network

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