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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 (29 total).

Acoustic Neuroma Association (ANA)

Annotation: The Acoustic Neuroma Association (ANA) is a national, patient-founded support and information organization for people who have experienced acoustic neuroma or other benign tumor affecting the cranial nerves. The association promotes and supports education and research. Publications for consumers include a booklet, Acoustic Neuroma; a brochure, Acoustic Neuroma? Inside—Some Answers; and a quarterly newsletter, Notes. ANA also sponsors a biennial national conference.

Keywords: Acoustic neuroma, Nervous system diseases, Support groups, Tumors

American Academy of Neurology (AAN)

Annotation: The American Academy of Neurology (AAN), established in 1948, is an international professional association of more than 20,000 neurologists and neuroscience professionals dedicated to providing the best possible care for patients with neurological disorders. AAN publishes the Patient Information Guide for Neurology, a comprehensive directory of patient- and family-oriented publications and services for people with neurologic disorders. The guide includes information sources for more than 300 neurologic disorders, and it lists the addresses, E-mail addresses, Internet sites, and telephone numbers of more than 185 organizations that provide patient information services. Publications include a catalog, a newsletter, and a journal. AAN also sponsors conferences and training seminars.

Keywords: Neurology, Nervous system diseases, Neurologists, Professional societies

American Parkinson Disease Association (APDA)

Annotation: The American Parkinson Disease Association (APDA) funds medical research, organizes support group chapters, and provides information and referral services to patients, their families, and the public. Publications include Be Active, Good Nutrition and Coping with Parkinson Disease, Parkinson's Disease Handbook (in English and Spanish), Speaking Effectively, and a quarterly newsletter. The association also provides materials in Spanish, Italian, Chinese and Japanese languages. The association sponsors conferences. The association's West Coast office is located at 10850 Wilshire Boulevard, Suite 730, Los Angeles, CVA 90024, (800) 908-2732.

Keywords: Medical research, Support groups, Information services, Nervous system diseases, Parkinson disease

Batten Disease Support and Research Association (BDSRA)

Annotation: The Batten Disease Support and Research Association (BDSRA) sponsors research on Batten disease and provides support, referrals, and information to families affected by the disease. Publications include Batten Disease: Neuronal Ceroid Lipofuscinoses and a newsletter. Some materials are available in Spanish, French and other languages. BDSRA also sponsors conferences, training seminars, and workshops.

Keywords: Brain diseases, Batten disease, Medical research, Support groups, Nervous system diseases, Neuronal ceroid lipofuscinoses

Children's Tumor Foundation (CTF )

Annotation: The Children's Tumor Foundation (CTF), formerly the National Neurofibromatosis Foundation, supports research on the causes, prevention, and treatment of neurofibromatosis. The foundation provides information on the disorder to patients and their families and helps them to find medical, social, and genetic counseling. It also provides information to health professionals and the public. Publications include Neurofibromatosis: A Handbook for Parents, Neurofibromatosis: Information for Kids, Neurofibromatosis: Information for Patients and Families, and a quarterly newsletter, neuro•fibroma•tosis news. Audiovisual materials include: The Many Faces of NF, video and also audiocassette of Information for patients and families. CTF also supports a Kids' Council for children to connect with other children with neurofibromatosis and to participate in running programs and fundraising activities. Materials are available in Spanish, French, Asian, and other select languages. The foundation also sponsors conferences.

Keywords: Neurofibromatosis, Information services, Medical research, Nervous system diseases

Dana Alliance for Brain Initiatives (DABI)

Annotation: The Dana Alliance for Brain Initiatives, supported by the Charles A. Dana Foundation, is an independent nonprofit organization of more than 190 neuroscientists dedicated to increasing public understanding of brain-related diseases, disorders and research. The Alliance's Internet site, Dana BrainWeb (, offers recommendations from the Alliance for Internet sites with validated current information useful for the lay person. Covering over 20 common brain diseases and disorders, this guide will link you to sites that provide descriptions of each disease, background for talking with a physician, treatment options, support for families and care givers, and sources of more information. The site also provides information on developments in brain research.

Keywords: Advocacy, Brain diseases, Nervous system diseases

Dysautonomia Foundation (FD (Familial Dysautonomia))

Annotation: The Dysautonomia Foundation informs parents, physicians, and professionals about familial dysautonomia (FD), also called Riley-Day syndrome. The foundation supports the Dysautonomia Treatment and Evaluation Center at New York University Medical Center and at Hadassah Hospital, Israel. Publications include a journal, a biannual newsletter (Dys/course), and a brochure (Familial Dysautonomia Facts You Should Know). Technical information is provided on the Web site. In 2001, The Dysautonomia Foundation found the FD gene (IKAP) and now testing is available to all Jewish people of Ashkenazi decent.

Keywords: Autonomic nervous system diseases, Familial dysautonomia

Georgetown University Center for Child and Human Development (GUCCHD)

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

Guardians of Hydrocephalus Research Foundation (GHRF)

Annotation: The Guardians of Hydrocephalus Research Foundation (GHRF), an organization made up of concerned parents and volunteers, is dedicated to assisting children with hydrocephalus who require operations and special equipment such as braces, walkers, and wheelchairs. The foundation also disseminates information to the general public and supports research research into finding the causes, cure, and prevention of hydrocephalus.

Keywords: Hydrocephalus, Nervous system diseases, Support groups

Guillain-Barré Syndrome Foundation International

Annotation: Established in 1981, the Guillain-Barré Syndrome Foundation International helps people to deal with Guillain-Barré syndrome (GBS) and its effects. The foundation educates the public and medical communities, supports medical research, and sponsors symposia. Publications include newsletters and educational booklets such as GBS, An Overview for the Layperson. The foundation has more than 130 chapters in the United States, Canada, Europe, Australia, and South Africa. Materials are available in Spanish, French, Dutch, and German.

Keywords: Acute idiopathic polyneuritis, Guillain Barre syndrome, Landry's ascending paralysis, Nervous system diseases

Hereditary Disease Foundation (HDF)

Annotation: The Hereditary Disease Foundation (HDF) conducts basic biomedical research in hereditary disease, primarily Huntington's disease and related neurogenetics illnesses. The foundation's research activities are accomplished through grant programs, workshops, and postdoctoral fellowship programs, with the use of biological specimen banks at Harvard University and the University of California, Los Angeles. In 1997, the Foundation launched the Cure Huntington's Disease Initiative. Services to consumers include referrals, reference information, and publications. HDF provides workshop information and reports and publishes a newsletter. The foundation also sponsors conferences.

Keywords: Huntingtons disease, Nervous system diseases, hereditary diseases,

Huntington's Disease Society of America (HDSA)

Annotation: The Huntington's Disease Society of America (HDSA) is an organization of over 30 chapters and affiliates nationwide, plus 17 Centers of Excellence, which fosters research on the treatment and cure of Huntington's disease and provides services to people with Huntington's disease and their families. The society offers fellowship grants and seed money to qualified research scientists, and it supports and coordinates a brain donor program that enlists the help of families in donating tissue essential for research. The society's information and referral services tap a nationwide network of physicians, scientists, social workers, and other professionals. HDSA maintains a listserv, publishes a newsletter, The Marker, three times a year, and provides catalogs of publications and audiovisual materials on all aspects of Huntington's Disease. Spanish-language materials are available.

Keywords: Huntingtons disease, Financial support, Information services, Medical research, Nervous system diseases

International Joseph Diseases Foundation (IJDF)

Annotation: The International Joseph Diseases Foundation (IJDF) provides information on Joseph disease, also known as Machado disease and SCA-3. IJDF helps patients find medical, social, and genetic counseling services. Publications include Fact Sheet—Newsletter, Support on Joseph Disease .

Keywords: Josephs disease, Information services, Nervous system diseases

Myelin Project

Annotation: The Myelin Project is an international grass roots organization whose mission is to accelerate medical research on myelin repair, in order to help individuals with multiple sclerosis, the leukodystrophies, and other myelin disorders. The project sponsors conferences and produces publications, including a newsletter. Some materials are available in Spanish and French.

Keywords: Central nervous system diseases, Leukodystrophies, Multiple sclerosis, Myelin sheath, Spinal diseases

National Aphasia Association (NAA)

Annotation: National Aphasia Association (NAA) provides information to persons with acquired aphasia (normal language has been developed and then been impaired due to trauma to the language centers of the brain) and will put parents of young persons (13-25) with acquired aphasia in touch with other families for information sharing and support. NAA is not prepared to aid families of children with developmental aphasia. Services to consumers include referrals, publications, and reference information. NAA publishes a newsletter, hosts online discussion forums, and sponsors conferences.

Keywords: Aphasia, Nervous system diseases

National Batten Disease Registry

Annotation: The National Batten Disease Registry provides information on Batten Disease, offers referrals to local resources, and maintains a national registry. The organization also offers neurological evaluation, genetic counseling, and diagnostic testing. Services to consumers also include reference information and publications. It is a program at the Institute for Basic Research in Developmental Disabilities.

Keywords: Batten disease, Brain diseases, Genetic counseling, Information services, Nervous system diseases

National Institute of Neurological Disorders and Stroke (NINDS)

Annotation: The National Institute of Neurological Disorders and Stroke (NINDS) responds to inquiries from consumers and professionals, provides information and publications, and conducts and supports research and training on the causes, prevention, diagnosis, and treatment of neurological disorders. A publications list is available. Some materials are available in Spanish. The Institute also sponsors conferences.

Keywords: Nervous system diseases, Strokes

National Niemann-Pick Disease Foundation (NNPDF)

Annotation: The National Niemann Pick Disease Foundation is a resource center for children, parents, and families affected by Niemann-Pick disease. The Foundation provides reference information to consumers, sponsors summer conferences for families, and publishes a newsletter. Informational packets are available as well.

Keywords: Nervous system diseases, Niemann Pick Disease, Parent groups

National Parkinson Foundation (NPF)

Annotation: The National Parkinson Foundation (NPF) sponsors research, treatment, and rehabilitation programs for Parkinson syndrome, disseminates information on current developments in research and treatment, and offers assistance in locating diagnostic and treatment services and establishing local support groups. Publications include The Parkinson Handbook, National Parkinson Foundation—Hope for the Afflicted (English and Spanish), The Parkinson Patient—What You and Your Family Should Know (English and Spanish), An Example to Us All—One Woman's Winning Battle, PATH—The Route to Better Management of Parkinson's Disease, How to Start a Support Group, Nutrition for Parkinsonians, Coping with Parkinson's Disease, and a quarterly newsletter, The Parkinson Report. Some materials are available in Spanish.

Keywords: Nervous system diseases, Parkinson disease, Rehabilitation programs,

National Spasmodic Torticollis Association (NSTA)

Annotation: The National Spasmodic Torticollis Association (NSTA) is a nonprofit organiation formed to give information and support to people with spasmodic torticollis (ST), a painful and debilitating neurological condition (although treatable using physical therapy) that affects over 150,000 people in the United States. Publications include a fact sheet about Spasmodic Torticollis and a quarterly newsletter. NSTA can also provide articles and information about ST in children.

Keywords: Spasmodic torticollis, Health education, Nervous system diseases, Support groups

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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.