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Strengthening 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 7 (7 total).

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.

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

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.

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

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.

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

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.

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

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.

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

Organic Acidemia Association (OAA)

Annotation: The Organic Acidemia Association (OAA) encourages communication and support among families and professionals dealing with organic acidemias and related rare metabolic disorders. Services to consumers include parent to parent networking and an internet listserv. Some materials are available in Spanish. The association publishes a newsletter three times a year and sponsors family conferences.

Keywords: Metabolic diseases, Argininosuccinic acidemia, Carbamyl phosphate synthetase deficiency, Citrullenemia, Ethylmalonic adipic acidemia, Homocystinuria, Methylmalonic acidemia, OTC deficiency, Organic acidemia, Propionic acidemia, Rare diseases, Support groups

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

   

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.