Search Results: MCH Organizations

Annotation: A Heartbreaking Choice provides resources and support for expectant parents who have received a diagnosis that their unborn child has a serious fetal anomaly or other live-threatening health problem that makes it unlikely that the baby will survive and thrive. For those who have made the decision to end their pregnancy when faced with such a grim diagnosis, this organization provides support groups, an online discussion forum, a confidential list service, an online memorial for grieving parents, personal stories, and feature articles to help these parents cope with their loss.

Keywords: Congenital abnormalities, Fetal death, Grief, Perinatal bereavement, Perinatal mortality, Pregnancy loss, Support groups

Annotation: AboutFace is an international organization providing information services, educational programs, and emotional networking support to individuals with facial disfigurements and their families. Membership includes children, adults, and families affected by facial differences, health care and social service providers, dental professionals, and educators. Publications include a bimonthly newsletter, brochures and booklets on medical conditions, treatment issues/plans and socialization issues etc., and a series of educational programs for elementary schools.

Keywords: Apert syndrome, Cleft lip, Cleft palate, Congenital port wine stain, Craniofacial abnormalities, Crouzon syndrome, Goldenhar syndrome, Naevus flammeus

Annotation: Birth Defect Research for Children (BDRC), formerly the Association of Birth Defect Children (ABDC), disseminates information on birth defects, especially those that may be caused by environmental substances such as drugs, pesticides and other chemicals, and radiation. It also provides referrals and helps people with birth defects to cope with problems associated with physical malformation. The 501 (c) (3) organization sponsors a national parent matching program that links families of children with similar birth defects, and in 1993 it established a National Birth Defect Registry that collects information on birth defects, learning disabilities, cancers, and other childhood disabilities that may be related to environmental exposure of either parent during or before pregnancy. Publications include fact sheets on the most common categories of birth defects as well as environmental toxins that have been linked to birth defects.  A free monthly newsletter is sent out electronically.  Parents may subscribe on the BDRC web site.

Keywords: Congenital abnormalities, Environmental exposures, Family support services, Information services

Annotation: The Costello Syndrome Family Network's main focus is parent-to-parent support. The network also helps qualified researchers learn about Costello syndrome by sharing research opportunities for parents to consent to include their children's information. Through a listserve, bi-annual conferences and the published peer-reviewed articles based on information shared by parents, network families can better understand their children's syndrome and refine the "best practice" toolkit to care for and raise them. The network offers referrals, inquiry responses, and reference information. The network operates in the United States and internationally. The Web site is available in French, German, Italian, Portuguese, and Spanish, in addition to English.

Keywords: Congenital abnormalities, Non-English language materials, Spanish language materials, Support groups, Syndromes

Annotation: The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) -- renamed by Congress in 2008 in honor of the Institute's founder -- supports and conducts research on topics related to the health of children, adults, families, and populations. The mission of the NICHD is to ensure that every person is born healthy and wanted; that women suffer no harmful effects from reproductive processes; that all children have the chance to achieve their full potential for healthy and productive lives, free from disease or disability; and to ensure the health, productivity, independence, and well-being of all people through optimal rehabilitation. Areas of emphasis include: events that happen prior to and throughout pregnancy and childhood, including infertility, pre-term birth, birth defects, developmental disabilities, and human learning and behavior; human growth and development across the lifespan, including nutrition, developmental biology, and congenital diseases; reproductive health and education about reproductive practices, including disorders affecting fertility and infertility, contraception, and sexually transmitted diseases/HIV/AIDS; and medical rehabilitation interventions for those affected by disabilities, including technology and assistive-device development, intervention evaluation, and health promotion and prevention of disabilities. The Center for Research for Mothers and Children, the Center for Population Research, the National Center for Medical Rehabilitation Research, the Division of Epidemiology, Statistics, and Prevention Research, and the Division of Intramural Research comprise the NICHD. The Institute offers a wide range of materials for various audiences, from researchers to parents; many publications are available in Spanish.

Keywords: Adolescent health, Child health, Congenital abnormalities, Infant health, Infant mortality, Maternal health, Medical research, Mental retardation, National Institutes of Health, Nutrition, Population dynamics, Publications, Reproductive health, Spanish language materials, Training

Annotation: The Georgetown University Center for Child and Human Development (formerly Georgetown University Child Development Center) was established over four decades ago to improve the quality of life for all children and youth, especially those with, or at risk for, special needs and their families. A division of Georgetown University's Department of Pediatrics, the Georgetown University Center for Child and Human Development is founded on an interdisciplinary approach to service, training programs, research, community outreach, and public policy. The center sponsors conferences, training seminars and workshops. Services to consumers include referrals, publications, a catalog, and access to a list service. The policy component of the Center works internationally and nationally, as well as with states and communities, to develop and implement policies and service systems that serve the child.

Keywords: Communication disorders, Congenital abnormalities, Developmental disabilities, Early childhood education, Listservs, Nervous system diseases, Neuropsychology

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 Center for Environmental Health (NCEH), a component of the Centers for Disease Control and Prevention (CDC), strives to promote health and quality of life by preventing or controlling those diseases or deaths that result from interactions between people and their environment. Programs and campaigns include vessel sanitation, healthy places, poisoning prevention, and air pollution and resipratory health. Information is also provided on asthma and emergency response. Services to consumers include referrals, reference information and publications, including a newsletter. The center also sponsor conferences and training seminars and workshops. Some materials are available in Spanish.

Keywords: Injury prevention, Congenital abnormalities, Data, Developmental disabilities, Environmental health, Environmental influences, Government financing, Hazardous materials, Lead poisoning, Medical research, Reproductive hazards, Teratology

Annotation: The National Center on Birth Defects and Developmental Disabilities (NCBDDD) is a federal agency within the Centers for Disease Control and Prevention. Activities include surveillance, research, technical assistance to states, and provision of information and education to the public. Topics include: causes of birth defects (including causes, having a healthy pregnancy, folic acid, and fetal alcohol syndrome); developmental disabilities (austism spectrum disorders, cerebal palsy, vision impairment, hearing loss, mental retardation), helping children develop and reach their full potential (child development, early hearing detection and intervention, attention deficit hyperactivity disorder, Duchenne Becker Muscular Dystrophy), and promoting health and well-being among people of all ages with disabilities (disability and health, hereditary blood disorders, and woment with disability). NCBDDD publishes a newsletter and a journal and sponsors conferences, training seminars, and workshops. Some publications and the Web site are available in Spanish.

Keywords: Congenital abnormalities, Data, Developmental disabilities, Disease prevention, Environmental health, Human development, Pregnancy, Prenatal care, Teratology

Annotation: Publications include a newsletter. Materials will soon be available in a variety of foreign languages, including German, Dutch, and Swedish.

Keywords: Digestive system disease, Congenital abnormalities, Imperforate Anus, Imperforate anus, Osteochondritis, Radial and renal dysplasia , Respiratory diseases, Scheurmanns disease, TEF/- , Tracheoesophageal fistola, Tracheoesophageal fistula, Vertebral defects, support groups

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