Child-Neuro: Patient Educational and
Disease Oriented Resource Links - Neurology
WWW sites
- NINDS list of disease-specific publications (National Institute of Neurological
Disorders and Stoke) Lists material available from NINDS both on-line and in print version. Excellent resource materials; available for downloading and reproduction
- Neurology Patient Information Fact Sheets from AAN Two or three paragraph briefs on common neurologic conditions, from the American Academy of Neurology.
- Family Village alphabetized list of disease-specific information
- Support-Group.com allows people with health, personal, and relationship issues to come together and share their experiences through IRC chat and Bulletin Boards. It also has a wealth of links to support-related information on the Internet.
Epilepsy, Tourette, Wilson, ADD, etc.
- MGH Neurology Web-Forum, an interactive, online discussion about various Neurology-related topics. Individual forums include
- MGH Neurology Chat Rooms These rooms allow real-time conversation with other people on the Net about a variety of
Neurology-related topics.
- Alternating Hemiplegia of Childhood
- Alzheimer's Disease
- Angelman syndrome
- Angels Amond Us Another Angelman syndrome site
- World Arnold Chiari Malformation Association
- Ataxia Telangiectasia Childrens
Project
- Austism and Asperger syndrome: see Psychiatric, ADD, and behavioral page
- Batten Disease Support and Research Association
- Questions from Kids about Blindness from the National Federation of the Blind.
- Brain injury
- Brain tumors
- Cerebral Hypoxia & Ischaemia Web Resources A compilation of links including text documents and research.
- Cerebral palsy
- The CHARGE Syndrome Foundation
- Craniofacial Anomalies, from Columbia University
- Diagnosis and Evaluation of Dementia - Practice Parameter Identification of dementia, diagnostic workup, and differential diagnosis. American Academy of Neurology.
- DISK DISEASE University of Iowa: Diagnosis Multimedia Teaching Tutorial (Text and Images).
- Down Syndrome: Position Statement on Atlanto-Axial Instability from the Professional Advisory Committee, National Down Syndrome Congress.
- Down Syndrome Quarterly, a print journal (subscription information). Also includes guidelines for health care of people with Down syndrome
- Dystonia
- Epilepsy
- Familial Dysautonomia
- Fetal alcohol syndrome
- Fragile X
- Fragile X Advocate, a publication on insights, current research, and practical information on individuals with fragile X syndrome and their families.
- FRAXA Research Foundation Fragile X; an email list is also available thru the web site
- Gaucher Page
- Headache
- Hydrocephalus: Fact Sheet from the Hydrocephalus Association
- The Klippel-Feil Syndrome Network
- Language disorders
- United Leukodystrophy Foundation with information on such disorders as adrenoleukodystrophy, Canavan disease, Krabbe's globoid cell leukodystrophy, and Pelizaeus-Merzbacher Disease.
-
Lissencephaly Network, Inc. for the parents, siblings, physicians, and therapists of
children born with lissencephaly (smooth brain). - Frequently Asked Question list from the Migraine support group on the Usenet, alt.support.headaches.migraines
- Mitochondrial disorders
- Multiple sclerosis
- Neurofibromatosis
- Neuromuscular disorders
- Ischemic Optic Neuropathy Multimedia Tutorial at Iowa Outline presentation annotated with diagrams and retinal images.
- PKU Support Group of Florida. Phenylketonuria.
- Prader-Willi
Foundation on the Internet
- The International Rett Syndrome Association [not working; 8/5/96]
- RETTNET Mailing list and homepage (including archives of mailing list), for parents and professionals on the many facets of Rett syndrome.
- Swedish Rett Center
- Sleep
- Sleep Sleep Medicine WWW
This home page contains pointers to resources pertaining to sleep medicine and sleep-related information from BBS's, newsgroups, federal and state sources, and associations. Contact: Michael Thorpy MD, [email protected]
- Sleep Home Pages from UCLA
Another site providing linkages to sleep related resources, including bibliographic references, archival video histories, organizational directories, funding opportunities, and locations of sleep labs.
- Clinical Sleep Practice Discussion Forum Acccepts posts to a threaded web based discussion forum. Presents a monthly sleep disorder case, figure, or graph for comment.
- Bisleep Sleep Home Pages A resource for individuals who are involved in the research or
treatment of sleep and sleep-related disorders. Presents a
calendar of events, discussion forums, research, abstracts, and
classifieds.
- Spina bifida
-- information from the March of Dimes
- Spinal injury
- Cure Paralysis Home Page
This site encourages the cross-fertilization of ideas, concepts, and research that will lead to appropriate action, enabling the favorable climate for implementation of the cure of spinal cord paralysis. Contact: [email protected]
- Spinal Disorders and Their Treatment New York University. Text, Images & MPEG's.
Includes Back Pain; Lumbar Disc Herniation; Lumbar Stenosis; Cervical Disc Disease and Cervical Spondylosis.
- Stroke
- Tay Sachs, late onset
- TINNITUS OHSU Tinnitus Clinic
Includes: Tinnitus Fact Sheet, Masking the Relief of Tinnitus, Xanax for Relief of Tinnitus, Publications.
- Tourette Syndrome
- SOFT, the Support Organization for Trisomy 18, 13, and Related Disorders.
- Tuberous sclerosis
- Wolf-Hirschhorn Syndrome (4P-)
- Anatomy resources
Go back to Child-Neuro Homepage
Go back to Child-Neuro Linkage Elsewhere page
Go back to Patient Educational and Disease Oriented Resources page
For questions or comments, contact
Steven Leber, M.D., Ph.D. [email protected] or
Kenneth Mack, M.D., Ph.D. [email protected]
Last updated 4-July-1997 by [email protected].