Publications search results: 1 to 20 of 31

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1. To Breastfeed or Not: PKU, Galactosemia, Other Rare Disorders and Possible Misdiagnosis (Copyright © LLLI)
   http://www.lalecheleague.org/llleaderweb/LV/LVAugSep98p78.html
   To Breastfeed or Not: PKU, Galactosemia, Other Rare Disorders and Possible Misdiagnosis (Copyright © LLLI) This publication discusses the risks of breastfeeding infants with rare diseases such a phenylketonuria (PKU) or galactosemia. It also discusses the possibility of misdiagnosis and the ... details
2. Genetic and Rare Conditions Site (Copyright © University of Kansas Medical Center)
   http://www.kumc.edu/gec/support/
   Genetic and Rare Conditions Site (Copyright © University of Kansas Medical Center) This web site contains information and links about many genetic and rare conditions. It also links to teaching activities for educators about some of the conditions. GENETIC DISORDERS,RARE DISEASES AND DISORDERS details
3.   Rare Diseases Terms
   http://rarediseases.info.nih.gov/asp/diseases/diseases.asp
   Rare Diseases Terms This internet site provides a list of terms associated with various rare diseases. RARE DISEASES AND DISORDERS details
4.   Progeria
   http://www.nih.gov/about/researchresultsforthepublic/Progeria.pdf
   Progeria This publication explains the causes and symptoms of progeria, a genetic disorder that causes premature aging in young children. The article also discusses current NIH research on progeria, as well as plans for future research. RARE DISEASES AND DISORDERS,RESEARCH details
5.   Rare Diseases Clinical Research Network
   http://www.nih.gov/about/researchresultsforthepublic/RareDiseasesCRN.pdf
   Rare Diseases Clinical Research Network This publication discusses the problem of rare diseases, such as neurologic and metabolic conditions, in terms of their research and treatment. Also described is NIH's response to the problem and future research NIH may do on the subject. RESEARCH,RARE ... details
6.   NINDS Arachnoid Cysts Information Page
   http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm
   NINDS Arachnoid Cysts Information Page The publication contains explains what arachnoid cysts are. It also includes information on the causes, treatment, and prognosis. NEUROLOGICAL DISEASES AND DISORDERS,RARE DISEASES AND DISORDERS details
7. Facts About Rare Muscular Dystrophies (Copyright © Muscular Dystrophy Association)
   http://www.mdausa.org/publications/fa-rareMD.html
   ... Dystrophies (Copyright © Muscular Dystrophy Association) This pamphlet contains basic information on rare muscular dystrophies. It lists the different types and explains the causes, effects, and treatment options. MUSCULOSKELETAL DISEASES AND DISORDERS,MUSCULAR DYSTROPHY,RARE DISEASES AND DISORDERS details
8. Warning Signs in Tuberous Sclerosis (Copyright © The Tuberous Sclerosis Alliance)
   http://www.tsalliance.org/Fact%20Sheets/warningsigns.pdf
   Warning Signs in Tuberous Sclerosis (Copyright © The Tuberous Sclerosis Alliance) This fact sheet lists some of the symptoms that may be warning signs for larger problems in people with tuberous sclerosis. TUBEROUS SCLEROSIS,RARE DISEASES AND DISORDERS details
9. Accepting the Diagnosis of Tuberous Sclerosis Complex (Copyright © The Tuberous Sclerosis Alliance)
   http://www.tsalliance.org/Fact%20Sheets/accepting%20the%20diagnosis.pdf
   ... The Tuberous Sclerosis Alliance) This fact sheet explains why it may be difficult for a family to accept a diagnosis of tuberous sclerosis. It also discusses whether or not you should tell your child that he or she has been diagnosed with this disease. RARE DISEASES AND DISORDERS,TUBEROUS SCLEROSIS details
10.   Tuberous sclerosis
    http://www.nlm.nih.gov/medlineplus/ency/article/000787.htm
    Tuberous sclerosis This publication explains what tuberous sclerosis is and gives information on the causes, incidences, risk factors, symptoms, prognosis, and complications. RARE DISEASES AND DISORDERS,TUBEROUS SCLEROSIS details
11. Tuberous Sclerosis and Your Baby (Copyright © AAFP)
    http://familydoctor.org/496.xml
    Tuberous Sclerosis and Your Baby (Copyright © AAFP) This publication briefly explains what tuberous sclerosis is, what the signs are, and how the symptoms are treated. RARE DISEASES AND DISORDERS,TUBEROUS SCLEROSIS details
12. About Tuberous Sclerosis Complex (Copyright © The Tuberous Sclerosis Alliance)
    http://www.tsalliance.org/pages.aspx?content=2
    ... © The Tuberous Sclerosis Alliance) This publication explains what tuberous sclerosis complex is, provides information on the genetics and symptoms of the disease, answers several common questions, and gives information on living with the disease. RARE DISEASES AND DISORDERS,TUBEROUS SCLEROSIS details
13. NCI/PDQ® Patients: Pheochromocytoma (Copyright © Trustees of the University of Pennsylvania)
    http://www.oncolink.org/types/article.cfm?c=4&s=6&ss=48&id=9082
    ... © Trustees of the University of Pennsylvania) This internet site contains general information on Pheochromocytoma. It discusses the different stages of this particular cancer, the different classifications, and the treatment options. ADRENAL DISEASE/DISORDER,CANCER,RARE DISEASES AND DISORDERS details
14. NCI/PDQ® Health professionals: Pheochromocytoma (Copyright © Trustees of the University of Pennsylvania)
    http://www.oncolink.org/types/article.cfm?c=4&s=6&ss=48&id=9229
    ... of Pennsylvania) This internet site provides general information on pheochromocytoma. It discusses the cellular classification of the cancer, stages, treatment options, and the different types and classifications of pheochromocytoma. ADRENAL DISEASE/DISORDER,CANCER,RARE DISEASES AND DISORDERS details
15.   Genetics Home Reference
    http://ghr.nlm.nih.gov
    Genetics Home Reference Genetics Home Reference, the National Library of Medicine’s web site for the consumer provides information about genetic conditions and the genes or chromosomes responsible for these conditions. GENETIC DISORDERS,BIRTH DEFECTS,GENETIC TESTING,RARE DISEASES AND DISORDERS details
16.   Tuberous Sclerosis Fact Sheet
    http://www.ninds.nih.gov/disorders/tuberous_sclerosis/detail_tuberous_sclerosis.htm
    ... This fact sheet provides information on tuberous sclerosis. It includes the causes, signs and symptoms, diagnosis, treatment, prognosis, research, and where to obtain more information. DISABILITIES,GENETIC DISORDERS,NEUROLOGICAL DISEASES AND DISORDERS,RARE DISEASES AND DISORDERS,TUBEROUS SCLEROSIS details
17.   Hydrocephalus Fact Sheet
    http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm
    ... types, who gets the disorder, the cause, symptoms, diagnosis, current treatments and possible complications. Hydrocephalus is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. NEUROLOGICAL DISEASES AND DISORDERS,HYDROCEPHALUS,RARE DISEASES AND DISORDERS details
18.   Myoclonus Fact Sheet
    http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm
    ... Myoclonus describes a symptom and generally is not a diagnosis of a disease. It refers to sudden, involuntary jerking of a muscle or group of muscles. Causes, treatment & research are discussed. MUSCULOSKELETAL DISEASES AND DISORDERS,RARE DISEASES AND DISORDERS,AUTOIMMUNE DISEASES AND DISORDERS details
19.   The Dystonias Fact Sheet
    http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm
    The Dystonias Fact Sheet This fact sheet explains the symptoms and treatments for the dystonias, and the latest research efforts being done. MUSCULOSKELETAL DISEASES AND DISORDERS,RARE DISEASES AND DISORDERS details
20. Myositis (Polymyositis Dermatomyositis) (Copyright © Arthritis Foundation)
    http://www.arthritis.org/conditions/DiseaseCenter/myositis.asp
    Myositis (Polymyositis Dermatomyositis) (Copyright © Arthritis Foundation) This fact sheet provides a definition of myositis, as well as the symptoms, causes, diagnosis, and treatment options. MUSCULOSKELETAL DISEASES AND DISORDERS,RARE DISEASES AND DISORDERS,SKIN DISEASES AND DISORDERS details

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