Research
  We understand that reliable information and support can be hard to find, especially for rare disorders. Selected links are provided here to supplement those on the Research Interests page of this site. We recommend that families and individuals consult directly with their healthcare providers for information and guidance specific to their condition.
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  Resources

GENERAL REFERENCE
NINDS Brain Anatomy Baiscs: Know your brain
NINDS Brain Basics Illustrated Anatomy
NINDS Genes at Work in the Brain
NCBI Genetic Testing Registry: A central location for voluntary submission of genetic test information by providers, with the goal advancing public health and research on the genetic basis of health and disease.
GeneTests: A publically funded resource providing information on medical genetics and available laboratory testing and clinical services. *
          Illustrated Glossary of medical genetic terms
          Autosomal Recessive Inheritance
          Autosomal Dominant Inheritance
          X-Linked Recessive Inheritance
Online Mendelian Inheritance in Man (OMIM): A database of human genes and genetic conditions. *
PubMed: PubMed is a searchable library containing more than 20 million citations for biomedical journal articles and online books.
* These sites are targeted to healthcare providers and researchers.



NATIONAL ORGANIZATIONS

Center for Parent Information and Resources
Genetic Alliance

National Institutes of Health
National Institute of Neurological Disorders and Stroke
National Organization for Rare Disorders, Inc.
National Society of Genetic Counselors
US Department of Health and Human Services (DHHS)
DHHS Office for Human Research Protections
BOSTON AREA ORGANIZATIONS

Beth Israel Deaconess Medical Center
Broad Institute
Boston Children's Hospital
Federation for Children with Special Needs - Massachusetts
Harvard Medical School
Massachusetts Office of Health and Human Services


CONDITION-SPECIFIC RESOURCES AND SUPPORT NETWORKS


Agenesis of the Corpus Callosum Network
Agenesis of the corpus callosum - Yahoo Group
National Organization for Disorders of the Corpus Callosum
Autism Society of America
Autism Speaks
Chromosome Deletion Outreach
Epilepsy-Kids: Parents of children with epilepsy - Yahoo Group
Epilepsy Foundation of America
Hemimegalencephaly - Yahoo Group
Joubert Syndrome and Related Disorders Foundation
Lissencephaly - Yahoo Group
Lissencephaly Launch Pad
Microcephaly - Yahoo Group
Foundation for Children with Microcephaly
Polymicrogyria - Yahoo Group
Schiz Kids
Subcortical Band Heterotopia (Double Cortex Syndrome) - Yahoo Group
Walker Warburg Syndrome - Yahoo Group

The links to other websites on this page and their content are not meant to replace consultation with a healthcare provider and do not represent expressed endorsement of their organizations or the accuracy of their subject matter.
 
 
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