Search Results: MCH Organizations

Annotation: The American Brain Tumor Association (ABTA) provides publications which address brain tumors, their treatment, and coping with the disease; nationwide resource listings of brain tumor support groups and physicians offering investigative treatments;Connections pen-pal program; a national brain tumor symposium for patients and their families; and free social service consultations. ABTA also sponsors regional Town Hall meetings across the country which focus on state-of-the-art treatment options. ABTA funds brain tumor research at institutions throughout the United States and Canada. A tri-annual newsletter, the Message Line, describes those research advances as well as other ABTA activities. ABTA also publishes booklets.

Keywords: Brain diseases, Brain tumors, Cancer, Information services, Medical research

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

Annotation: The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations were created to gather, store, organize, analyze, and share information about holoprosencephaly. The Carter Centers evaluate selected patients, participate in multiple research studies, and provide extensive education to families and health care providers. This organization is a collaboration among investigators in the fields of neurology, genetics, radiology, and related disciplines. Publications include a journal and a newsletter. Some materials are available in Spanish. The clinical research centers are : Texas Scottish Rite Hospital, Dallas, TX; Lucile Packard Children's Hospital at Stanford University Medical Center, Stanford, CA; Kennedy Krieger Institute, Baltimore, MD.

Keywords: Brain diseases, Children with special health care needs

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 (http://www.dana.org/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

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

Annotation: The National Brain Tumor Foundation (NBTF) was established by a group of brain tumor patients and their families. The foundation supports research, provides information and support services, and sponsors a biennial conference. NBTF publications include Brain Tumors: A Guide, a quarterly newsletter called Search, a publication for parents Understanding your Child's Brain Tumor, Understanding Your Brain Tumor: Glioblastoma Multiforme, several fact sheets, and a directory of support groups in North America. NBTF sponsors conferences, training seminars, workshops, and teleconferences. Some materials are available in Spanish.

Keywords: Brain diseases, Cancer, Brain tumors, Information services, Medical research, Support groups

Annotation: The National Foundation for Brain Research (NFBR) is a nonprofit organization that supports research on the prevention and cure of diseases of the brain. The foundation sponsors conferences and training seminars. NFBR works in part through its closely affiliated Decade of the Brain Coalition, a comprehensive coalition of professional, medical, and scientific societies, volunteer health organizations, federal government agencies, and private industry, seeking expansion of research and new therapies for these neurological, mental, and addictive disorders.

Keywords: Brain diseases, Research