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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 20 (26 total).

American Association of Kidney Patients (AAKP)

Annotation: The American Association of Kidney Patients (AAKP) works to educate and support kidney patients and their family members. Its mission is to improve the lives of fellow kidney patients and their families by helping them deal with the physical, emotional and social impact of kidney disease. Members are people on hemodialysis or peritoneal dialysis, people with kidney transplants, their families and friends, and professionals in the dialysis field. Publications include a newsletter, a bimonthly magazine and a magazine for those who may be at risk for kidney disease. Several materials are available in Spanish. The organization sponsors conferences and hosts an annual convention.

Keywords: Kidney diseases, Chronic kidney failure, Dialysis, Organ transplantation, Patient education

American College of Gastroenterology (ACG)

Annotation: Founded in 1932, the American College of Gastroenterology (ACG) works to advance the scientific study and medical practice of diseases of the gastrointestinal (digestive) tract. The college sponsors annual scientific meetings, provides regional postgraduate training courses, awards research grants, advocates on behalf of gastroenterologists and their patients, and disseminates scientific information on digestive health and GI disorders. Publications include the Journal of Gastroenterology. Patient materials are posted on ACG's Web site.

Keywords: , Gastroenterology, Advocacy, Disease prevention, Gastrogenterologists, Gastrointestinal diseases, Grants, Health promotion, Information sources, Patient education, Professional societies, Professional training

American College of Radiology (ACR )

Annotation: The American College of Radiology (ACR) works to ensure that imaging is safe, effective, and accessible to those who need it. Members include radiologists, radiation oncologists, and medical physicists. The college sponsors Webcasts, conducts research, provides training materials, and produces publications, including practice guidelines and technical standards, as well as patient materials. In addition to ACR's main Web site, the college also maintains a Web site designed specifically for patients in collaboration with the Radiological Society of North America (see

Keywords: Patient education, . Research, Professional societies, Professional training, Radiology

American Gastroenterological Association (AGA)

Annotation: The American Gastroenterological Association (AGA) is a society of physicians, surgeons, scientists, and other individuals within the healthcare community who have a demonstrated a continued interest in the functions and disorders of the digestive system. As a professional association, AGA serves as an advocate for its members and their patients; supports members’ practices and scientific needs; and promote the discovery, dissemination, and application of new knowledge leading to the prevention, treatment and cure of digestive diseases. AGA offers training and career development opportunities, publishes periodicals, and provides member resources such as patient education materials and an online supply store.

Keywords: Professional training, Gastroenterology, Advocacy, Disease prevention, Gastrogenterologists, Gastrointestinal diseases, Health promotion, Information sources, Patient education, Professional education, Professional societies, Publications

American Geriatrics Society (AGS)

Annotation: The American Geriatrics Society (AGS) is an association of health care providers dedicated to improving the health and well-being of all older adults. AGS advocates for high quality, comprehensive accessible care and promotes research that expands knowledge of the aging process and the health care problems of older adults. The society provides public education and information and conducts education programs for health professionals. Publications include patient education materials, periodicals including the Journal of the American Geriatrics Society, and AGS's Complete Guide to Aging and Health (for lay audiences). Membership is open to anyone with an interest in geriatric health care.

Keywords: Older adults, Advocacy, Aging, Educational materials, Geriatrics, Information sources, Patient education, Policy development, Professional education, Public education, Public policy, Publications , Resources for professionals

American Obesity Association (AOA)

Annotation: The American Obesity Association (AOA) is a non-profit organization that works to educate the public about obesity and its causes, treatment options, and prevention strategies. The AOA focuses on changing public policy and perceptions about obesity and works to act as an agent of change to move society to view obesity as a disease and to fashion appropriate strategies to deal with the epidemic. The AOA's advocacy work focuses on policymaking that improves the lives of persons with obesity including health insurance coverage for obesity treatment and prevention programs, government funding for obesity research, and the elimination of policies and laws that negatively affect persons with obesity. The American Obesity Association Research Foundation (AOARF) was established to solicit and disperse funds to support obesity research. Publications include fact sheets, booklets, and a newsletter. The AOA also sponsors conferences.

Keywords: Health education, Health policy, Health promotion, Obesity, Patients rights

Brigham and Women's Hospital

Annotation: Brigham and Women's Hospital (BWH) is a teaching hospital of the Harvard Medical School providing patient care, medical education, and research. The hospital maintains the BWH Health and Education Library which provides access to 400 medical eBooks through the netLibrary; provides online access to pamphlets on over 100 health topics published by BWH; and staffs a reference/referral service. The hospital Web site provides electronic access to Health Topics A-Z, covering topics such as aging and health, adolescent health, sports and fitness, mental health, men's health, and women's health.

Keywords: Hospital libraries, Library services, Education, Electronic publications, Hospitals, Libraries, Medical education, Medical research, Patient care, Patient education, Publications, Reference materials

C. Everett Koop Institute at Dartmouth

Annotation: The C. Everett Koop Institute at Dartmouth, founded in 1992 by former Surgeon General C. Everett Koop, M.D., Sc.D., is dedicated to promoting the ethic of prevention in American health care and lifestyles by fostering integrity, trust and communication in the doctor/patient relationship. The institute actively tries to instill the necessity of focusing education and practice on the needs of the individual, the family and the community. The institute publishes NNEHII News.

Keywords: Health promotion, Medical education, Physician patient relations, Preventive medicine

CAPHIS Top 100

Chromosome 18 Registry and Research Society

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

Easy-to-Read Health and Medical Information


Annotation: EthnoMed is an ethnic medicine website related to cross-cultural and refuge health topics, including health screening, cultural competence, breastfeeding, domestic violence, mental health, nutrition, oral health, women's health, and infant/child care The website contains information about cultural beliefs, medical issues, and related topics pertinent to the health care of immigrants to the United States, many of whom are refugees fleeing war-torn parts of the world.

Keywords: Cultural competence, Immigrants, Minority health, Non English language materials, Patient education materials, Refugees, Resources for professionals

Families of Spinal Muscular Atrophy (FSMA)

Annotation: Established in 1984, Families of Spinal Muscular Atrophy (FSMA) is a national organization that funds for research and promotes public awareness of Werdnig-Hoffmann disease, Kugelberg-Welander disease, and Aran-Duchenne adult progressive spinal muscular atrophy (SMA). Services include a referral system (in conjunction with the national SMA registry at Indiana University), a parent network, an equipment pool, and a resource library of print and audiovisual materials. Publications include a quarterly newsletter. The organization provides materials in Spanish and French. FSMA also sponsors conferences.

Keywords: Aran-Duchenne type (Adult progressive spinal muscular atrophy), Benign congenital hypotonia, Kugelberg-Welander disease, Neuromuscular diseases, Patient identification, Research, Education, Spinal muscular atrophy, Werdnig-Hoffmann disease

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

Harvard Pilgrim Health Care

Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI)

Annotation: The Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI) is a resource center of the National Hemophilia Foundation. Handi maintains a comprehensive resource collection of educational materials on hemophilia and AIDS/HIV. Areas of emphasis are HIV risk reduction (including outreach and strategies for promoting and maintaining behavioral change in people at risk), living with hemophilia and AIDS/HIV, treatments for HIV infection, and finance and reimbursement issues. Publications include HANDI Resource Update, HIV Treatment Information Exchange, and various bibliographies, resource packets, and fact sheets. Publications are available in Spanish.

Keywords: Hemophilia, AIDS, Educational materials, HIV, HIV infected patients, Information dessimination, Outreach

International Diabetes Center

Annotation: The International Diabetes Center provides education, clinical research, patient care, referrals, publications, and dissemination of information, technology, and service delivery programs for people with diabetes, their families, and concerned health professionals. The center sponsors conferences and training seminars and publishes a catalog and a newsletter. Some materials are available in Spanish. The center is a division of the Institute for Research and Education, Health System Minnesota and is designated a World Health Organization Collaborating Center for Diabetes Education Translation and Computer Technology.

Keywords: Diabetes, Health education, Information dissemination, Medical research, Metabolic diseases, Patient care

Learning about Diabetes

Annotation: Learning about Diabetes ia nonprofit corporation that provides consumers and health care professionals with information on diabetes care. The corporation develops low literacy health education programs and conducts research on the role of art and design in creating effective health care communications. Booklets in both English and Spanish, downloadable patient handouts, and visual education aids are available from the Web site. Free programs on this Web site can be translated to any additional language to non-profit organizations at cost.

Keywords: Spanish language materials, Consumer education, Diabetes, Patient education

March of Dimes (MOD)

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 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

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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.