Neurologic conditions

Including neuro-metabolic conditions, neuromuscular conditions, neurogenetic conditions, microcephaly, Alzheimer disease, CADASIL, Huntington disease, other neurology sites

• Association of Neuro-Metabolic Disorders

5223 Brookfield Ln

Sylvania, OH 43560-1809

Phone: (419) 885-1809

• National Institute of Neurological Disorders and Stroke (NINDS) Developmental and Metabolic Neurology Branch information and Clinical Trials
• Information About Neurological Disorders and Diseases, Society for Neuroscience
• Neuromuscular information
• Neurogenetic conditions, National Society of Genetic Counselors Web Resources
• Genetic Conditions/ Rare Conditions: Support Groups & Information Page - information on hundreds of support groups for neurological conditions including: acoustic neuroma, agenesis of corpus callosum, Alzheimer disease, amyotrophic lateral sclerosis, Angelman syndrome, hereditary ataxias, ataxia telangiectasia, , spastic paraplegia, Charcot-Marie-Tooth, Fragile-X syndrome, Huntington disease, leukodystrophy, lissencephaly, Lowe syndrome, metabolic conditions, mitochondrial conditions, mucopolysaccharidosis, muscular dystrophy /atrophy, Myotonic dystrophy, neurofibromatosis, phenylketonuria, hydrocephalus, spina bifida, neural tube defects,spinal muscular atrophy, Tay-Sachs disease, Gaucher, tuberous sclerosis, von Hippel-Lindau syndrome, etc.
• Creutzfeldt-Jakob Disease Foundation, Inc., including Resources
• Creutzfeldt-Jakob Disease Voice - (Creutzfeldt-Jacob) rare condition, viral
• Blood Recall/Withdrawal (Creutzfeldt-Jakob Disease), DOney, MSW
• Microcephaly related listserv for families, M Ellowitz, Texas, marce@infospinner.com
• Conditions involving brain malformations
• Making an Informed Choice About Genetic Testing (Huntington Disease, Myotonic Dystrophy, Spinocerebellar Ataxia brochures (pdf file format), Genetic Testing for Neurological Conditions, Medical Genetics and Neurology, University of Washington, Seattle, WA, USA

Alzheimer disease

• Alzheimer Association

919 N. Michigan Ave, Suite 1000

Chicago, IL 60611-1676

Phone: (800) 272-3900

Fax: (312) 335-1110

E-mail: webmaster@alz.org

• Alzheimer Disease Overview, GeneClinics
• Alzheimer Disease Information, National Institute of Neurological Disorders and Stroke (NINDS)
• ApoE and the Risk of Alzheimer's Disease, Harvard Medical School, Neuroscience Newsletter, Spring 1997
• Genetics and Alzheimer's Disease, National Institute on Aging, August 1997
• Use of Apolipoprotein E Testing for Alzheimer Disease Consensus Statement, American College of Medical Genetics, American Society of Human Genetics, American Academy of Neurology, American Psychiatric Association, and National Institutes of Health-Department of Education Working Group on Ethical, Legal, and Social Implications of Human Genome Research, JAMA(1995) 274:1627-1629
• The Alzheimer Page, Washington University in St. Louis
• Alzheimer Disease, Alzheimer's Disease Education and Referral (ADEAR)
• Alzheimer Disease Genetics, U.S. Dept Health and Human Services, National Institutes of Health, National Institute on Aging, August 1997
• 101 Things to do while visiting an older adult, St. Louis Alzheimer Association
• Genetic testing for Alzheimers, American Geriatrics Society position statement for late onset Alzheimers disease

  References:
  
  Edwardson, J., & Morris, C. (1998). The genetics of Alzheimer's disease. The number of genetic risk factors associated with this disorder is increasing steadily [editorial]. Bmj, 317(7155):361-2
  
  Farrer, L. A., Cupples, L. A., Haines, J. L., Hyman, B., Kukull, W. A., Mayeux, R., Myers, R. H., Pericak-Vance, M. A., Risch, N., & van Duijn, C. M. (1997). Effects of age, sex, and ethnicity on the association between apolipoprotein E genotype and Alzheimer disease. A meta-analysis. APOE and Alzheimer Disease Meta Analysis Consortium [see comments]. Journal of the American Medical Association, 278(16):1349-56
  
  Hardy, J., & Gwinn-Hardy, K. (1998). Genetic classification of primary neurodegenerative disease. Science, 282(5391):1075-9
  
  Lendon, C. L., Ashall, F., & Goate, A. M. (1997). Exploring the etiology of Alzheimer disease using molecular genetics. Journal of the American Medical Association, 277(10):825-31
  
  Kukull, W. A., & Martin, G. M. (1998). APOE polymorphisms and late-onset Alzheimer disease: the importance of ethnicity [editorial; comment]. Jama, 279(10):788-9
  
  Farrer, L. A., Cupples, L. A., Haines, J. L., Hyman, B., Kukull, W. A., Mayeux, R., Myers, R. H., Pericak-Vance, M. A., Risch, N., & van Duijn, C. M. (1997). Effects of age, sex, and ethnicity on the association between apolipoprotein E genotype and Alzheimer disease. A meta-analysis. APOE and Alzheimer Disease Meta Analysis Consortium [see comments]. Journal of the American Medical Association, 278(16):1349-56
  
  Mayeux, R., Saunders, A. M., Shea, S., Mirra, S., Evans, D., Roses, A. D., Hyman, B. T., Crain, B., Tang, M. X., & Phelps, C. H. (1998). Utility of the apolipoprotein E genotype in the diagnosis of Alzheimer's disease. Alzheimer's Disease Centers Consortium on Apolipoprotein E and Alzheimer's Disease [published erratum appears in N Engl J Med 1998 Apr 30;338(18):1325] [see comments]. New England Journal of Medicine, 338(8):506-11
  
  Post, S. G., Whitehouse, P. J., Binstock, R. H., Bird, T. D., Eckert, S. K., Farrer, L. A., Fleck, L. M., Gaines, A. D., Juengst, E. T., Karlinsky, H., Miles, S., Murray, T. H., Quaid, K. A., Relkin, N. R., Roses, A. D., St. George-Hyslop, P. H., Sachs, G. A., Steinbock, B., Truschke, E. F., & Zinn, A. B. (1997). The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective [see comments]. Jama, 277(10):832-6
  
  Thinakaran, G. (1999). The role of presenilins in Alzheimer's disease. Journal of Clinical Investigation, 104(10):1321-7

CADASIL

• CADASIL, Geneclinics
• CADASIL information, family site
• CADASIL research, lab
• CADASIL, medical student site

Brain and Tissue Banks for Developmental Disorders - Telephone: 1-800-847-1539

(in contract with The National Institutes of Child Health and Human Development)

Accepts donations of organs and tissues from babies, children, fetuses, etc. who have died from chromosome disorders, encephalopathies, amnioacidopathies, leukodystrophies, lysosomal disorders, neurological disorders, SIDS, unexplained MR, autism, etc. The tissue is utilized in research.

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Also See:

• National organizations information on genetic conditions or birth defects

• Professional Genetics Societies
• Genetic clinics, centers, departments

Revised January , 2011

   

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu

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