Search Results: MCH Organizations

Annotation: The Chromosome 18 Registry and Research Society is a nonprofit educational and research organization that locates people with chromosome 18 anomalies, educates families and the public on the prognosis and treatment of related disorders, links these families and their physicians to the research community, and encourages, conducts, and publishes research on topics that affect these families. The society maintains a database of families and interested persons, sponsors an annual conference, operates a parent network, and publishes a newsletter, Chromosome 18 Communiqué. The society sponsors a list service that is open to the public through their web site and also offers responses to inquiries from consumers.

Keywords: Chromosome abnormalities, Chromosome 18, Edwards syndrome, Genetic disorders, Health education, Listservs, Medical research, Medical research, Patient identification, Ring 18, Tetrasomy 18p

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: 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: 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

Keywords: Genetic disorders, Genetics

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: Klinefelter Syndrome and Associates, founded in 1989, is a nonprofit educational organization that works to increase public awareness of Klinefelter syndrome and its variations and to provide support and information to people with the syndrome. They also have families with 47XYY, and 47XXX plus variants of these conditions. The organization conducts workshops; holds an annual national conference and periodic regional meetings; and provides referrals, reference information, and publications (including a brochure on Klinefelter syndrome, a list service, and a newsletter). Some materials are available in Spanish.

Keywords: Klinefelter syndrome, Chromosome abnormalities, Family support groups, Genetic disorders, Listservs

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 Birth Defects Prevention Network (NBDPN) is a network of individuals working at the national, state, and local level in birth defects surveillance, research, and prevention. It serves as a forum for exchanging ideas about the prevention of birth defects, developing uniform methods of birth defect surveillance and research, and providing technical support for state and local programs. It was incorporated as a 501c3 non-profit organization in 2000, and aims to improve the quality of birth defect surveillance data; promote scientific collaboration for the prevention of birth defects; provide technical assistance for the development of uniform methods of data collection; facilitate the communication and dissemination of information related to birth defects; collect, analyze and disseminate state and population-based birth defect surveillance data; and encourage the use of birth defect data for decisions regarding health services planning (secondary disabilities prevention and services). The network holds annual meetings, and publishes an annual report on birth defects surveillance and prevention, a newsletter, and other materials.

Keywords: , Population surveillance, Congenital abnormalities, Collaboration, Data, Data collection, Genetic disorders, Information dissemination, Prevention programs, Research, Research methodology, Technical assistance

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: Established in 1984, the National Fragile X Foundation (NFXF) is a nonprofit organization that informs professionals, parents, and the public about the diagnosis and treatment of Fragile X syndrome. The foundation supports related research and clinical applications, organizes support groups for parents nationwide, provides referrals, holds biannual international conferences for professionals and parents, sponsors training seminars and publishes a quarterly newsletter. Some materials are available in Spanish.

Keywords: Chromosome abnormalities, Fragile X syndrome, Genetic disorders, Genetics, Biochemical genetics, Medical research, Mental retardation, X-linked mental retardation

Annotation: The Newborn Screening Information Center (NBSIC) provides information, materials, and resources about newborn screening in the United States to help increase awareness, knowledge, and understanding of newborn screening and genetic conditions. It aims to: define NBS, describe the NBS process, and explain how that process relates to follow up, diagnosis, and treatment; identify the conditions included as part of NBS; list the types of NBS results and describe what happens after screening for babies with each type of result; connect parents, parents-to-be, and health care providers with state-specific NBS resources; and help readers learn about updates in NBS. Lists of the specific disorders screened by each state are included. It also provides information on each of the conditions listed in the Recommended Uniform Screening Panel (RUSP) and information on other conditions that are not listed on the RUSP but are screened in some states. This website is maintained by the Health Resources & Services Administration’s Maternal and Child Health Bureau (MCHB),

Keywords: Genetic disorders, Genetic services, Neonatal screening, Resource centers

Annotation: The Provincial IODE Genetics Resource Centre, previously known as the Canadian Association of Genetic Counselors (CAGC), publishes the Canadian Directory of Genetic Support Groups, a resource guide for families and professionals seeking information on genetic support groups in Canada. The organization also provides reference information on genetic disorders. Some materials are available in French. The organization welcomes student inquiries and their services are free.

Keywords: Family support services, Genetic disorders, Resource materials

Annotation: The Support Organization for Trisomy 18, 13, and Related Disorders (S.O.F.T.) supports and educates families and caregivers of children with trisomy 18 or 13 and related trisomy disorders. The organization provides referrals, reference information and the following publications: Trisomy 18: A Book for Families, Trisomy 13: A Book for Families, Care of the Infant and Child with Trisomy 18 and Trisomy 13 and a bimonthly newsletter, SOFT Times. SOFT also provides some Spanish materials and sponsors conferences and workshops.

Keywords: Trisomy 13, Chromosome abnormalities, Edwards syndrome, Family support services, Genetic disorders, Health education, Patau syndrome, Support groups, Trisomy 6

Annotation: The Turner Syndrome Society of the United States is a nonprofit organization for women and girls with Turner syndrome and their families. The society promotes public education through television, newspapers, and a speakers' bureau, and it facilitates communication between local and state support organizations. Publications include a newsletter, and some materials are available in Spanish. TSS-US also provides chapter/support groups and sponsors workshops, training seminars, and annual conferences.

Keywords: Chromosome abnormalities, Genetic disorders, Public awareness materials, Turners syndrome, Women

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.

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