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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 15 (15 total).

ADHA Institute for Oral Health (IOH)

Annotation: The ADHA Institute for Oral Health (IOH) advances the profession of dental hygiene in collaboration with the American Dental Hygienists' Association through scholarships, research grants, community service grants, and fellowships. The website provides information on fundraising tools and resources, the IOH benefit reception and auction, and volunteer opportunities.

Keywords: Advocacy, Fundraising, Grants, Oral health, Professional education, Research

Association of University Centers on Disabilities (AUCD)

Annotation: The Association of University Centers on Disabilities (AUCD) supports and promotes a national network of university-based interdisciplinary programs. Network members comprise University Centers for Excellence in Developmental Disabilities, Leadership Education in Neurodevelopmental Disabilities programs, and Intellectual and Developmental Disability Research Centers. AUCD programs serve as a bridge between the university and the community, bringing the resources of both to achieve meaningful change. AUCD’s website addresses the range of interdisciplinary network activities, including services for children, adults, and families; academic training; research; training and technical assistance; policy advocacy; program evaluation; and dissemination of best practices and new information.

Keywords: Developmental disabilities, Children with special health care needs, Fundraising, Medical research, Mental retardation, SCAN, University affiliated centers, University affiliated programs

Ataxia Telangiectasia Children's Project

Annotation: The Ataxia Telangiectasia Children's Project, better known as the A-T Children's Project, was founded in late 1993 as a private, tax-exempt, non profit organization. It was formed to raise funds through events and contributions from corporations, foundations, and friends. The funds are then used to accelerate international scientific research aimed at finding a cure and improving the lives of all children with Ataxia Telangiectasia. The A-T Children's Project provides consumers with publications, reference information, and referrals. The organization also sponsors conferences, conducts workshops, and publishes a newsletter.

Keywords: Ataxia Telangiectasia, Fundraising, Medical research

AUA Foundation (AAU Foundation)

Annotation: The AUA Foundation is a partnership of physicians, researchers, health-care professionals, patients, caregivers, families and the public established to support and promote research, patient/public education and advocacy. Originally established in 1987 as the American Foundation for Urologic Disease (AFUD), the organization entered a new era of service in 2005 when it consolidated its programs with the American Urological Association . Information for researchers, health professionals, and patients is available via the Web site.

Keywords: , Foundations, Health education, Sexual health, Urologic diseases, Advocacy, Consumer education, Fundraising, Infertility, Kidney diseases, Preventive health services, Reproductive health, Research

Cystinosis Foundation

Cystinosis Research Network (CRN)

Annotation: The Cystinosis Research Network is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. The network offers news, information about cystinosis and about research, links to additional resources, and two e-mail discussions lists, one for parents and one for adolescents, and an e-mail newsletter.

Keywords: Children, Cystinosis, Fundraising, Metabolic diseases, Parent groups, Support groups

Foundation Fighting Blindness (FFB)

Annotation: The Foundation Fighting Blindness, Inc. (FFB) supports research aimed at preventions, treatments, and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases. FFB offers information and referral services for affected individuals and their families as well as for doctors and eye care professionals. The Foundation also provides comprehensive information kits on retinitis pigmentosa, macular degeneration, and usher syndrome. FFB's newsletter (In Focus) and its e-newsletter (In Sight) present articles on coping, research updates, and Foundation news. In Focus is published 3 times per year; In Sight is sent approximately 6 times per year. A national conference is usually held every other year.

Keywords: Retinitis pigmentosa, Bassen-Kornzweig Syndrome, Best disease, Blindness, Choroideremia, Fundraising, Gyrate atrophy, Information services, Laurence Moon Biedl Syndrome, Leber congenital amaurosis, Refsum disease, Stargardt disease, Usher Syndrome, Visiondisorders

Hereditary Hemorrhagic Telangiectasia Foundation International (HHT)

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

Iron Overload Diseases Association (IOD)

Annotation: Iron Overload Diseases Association (IOD) promotes research, provides referrals, conducts education programs for the medical profession and the public, sponsors annual symposia, acts as a clearinghouse for doctors and patients, sponsors screening programs, publicizes the problem of iron overload diseases through the media, maintains a computerized information center, and raises funds. Publications include Overload: An Ironic Disease, Iron Overload Alert, the bimonthly newsletter Ironic Blood, audiovisual materials, and a fact sheet.

Keywords: Hemochromatosis, Fundraising, Hematologic diseases, Iron overload diseases, Medical education, Medical research, Metabolic diseases, Self help clearinghouses

National Organization for Women Foundation

Annotation: The National Organization for Women Foundation is devoted to furthering women's rights through education and litigation. The Foundation is affiliated with the National Organization for Women, an organization of feminist activists whose goal is to bring about equality for all women.

Keywords: Feminism, Advocacy, Foundations, Fundraising, Gender discrimination, Women's rights

National Reye's Syndrome Foundation (NRSF)

Annotation: The National Reye's Syndrome Foundation, a not-for-profit health organization, was established in 1974 by parents of children with Reye's syndrome. The foundation works to provide guidance and emotional support for these children and their families, to encourage federal involvement in research, to coordinate prevention and treatment protocols, to promote education, and to raise funds for research on the causes and prevention of Reye's syndrome. The organization also provides materials and information for the public and medical communities, including referrals, reference information, and a newsletter. It also sponsors conferences and provides materials in Spanish and other select languages.

Keywords: Reyes syndrome, Children, Fundraising, Information services, Parent groups, Support groups

Oxalosis and Hyperoxaluria Foundation (OHF)

Annotation: The Oxalosis and Hyperoxaluria Foundation (OHF) provides support and information on current treatments for affected people and their families. The foundation disseminates information to physicians on standardized treatment plans, supports research through patient tracking and fundraising efforts, maintains a parent network, and publishes a newsletter. The foundation also sponsors conferences and training seminars for medical professionals only.

Keywords: Oxalosis, Fundraising, Hyperoxaluria, Information dissemination, Metabolic diseases, Support groups

PKD Foundation (PKD Foundation)

Annotation: The PKD Foundation (formerly the Polycystic Kidney Research Foundation) promotes research to find a treatment and cure of polycystic kidney disease. It develops funding for peer-approved biomedical research projects and works to educate the public by promoting programs of research and fostering the public awareness among medical professional and the general public. Services to consumers include publications and reference information. The PKD Foundation publishes a newsletter and sponsors conferences and training seminars. Materials are available in English, Spanish, French, German, Italian, Korean, Chinese, and Japanese.

Keywords: Kidney diseases, Fundraising, Health education, Information services, Medical research, Polycystic kidney disease

U.S. Office of Orphan Products Development (OPD)

Annotation: The Office of Orphan Products Development (OPD) collects and disseminates information on the prevalence of rare diseases and on sources of funding for research and treatment of these diseases. Services to consumers include referrals, publications, and reference information.

Keywords: Fundraising, Government financing, Rare diseases

UNICEF, the United Nation's Children's Fund

Annotation: UNICEF, the United Nation's Children's Fund, works with others around the globe to overcome the obstacles caused by poverty, violence, disease, and discrimination. UNICEF promotes immunization, works to prevent the spread of HIV/Aids among young people, promotes girls' education and gender equality, and advocates for children. Information by country, contained on the Web site, includes basic health indicators such as mortality and life expectancy; efforts in advocacy, education, and fundraising; and guidelines for becoming involved. UNICEF's Innocenti Research Centre helps to identify and research areas that are vital to the current and future work of the organization. A publications catalog is available online. Interested individuals are invited to subscribe to receive electronic news alerts.

Keywords: Immunization, AIDS, Adolescents, Child advocacy, Child health, Developing countries, Fundraising, Gender discrimination, Health promotion, International health, Mortality, Preventive health services


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.