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Reviewed Resources:
41.Cystinosis Foundation
Includes brochures, FAQs, medical exchange, research, and a message forum as well as details about the organization and its events, conferences and fund raising.
URL:http://www.cystinosisfoundation.org
42.DermatologyChannel
Pemphigus: A look at what this is, the causes, symptoms, diagnosis, treatment and prognosis.
URL:http://www.dermatologychannel.net/blistering/pemphigus.shtml
43.Drkoop.com: Medical Encyclopedia:
Information about alstrom syndrome, the causes, risk factors, symptoms, signs and tests, treatment and prognosis.
URL:http://www.drkoop.com/conditions/ency/article/001665.htm
44.EA/TEF Family Support Connection
Formed by and for families of children born with EA/TEF (Esophageal Atresia and Tracheoesophageal Fistula) and the medical professionals who treat them.
URL:http://www.eatef.org/
45.Bullous pemphigoid
In depth article from eMedicine.com on this autoimmune skin condition.
URL:http://www.emedicine.com/derm/topic64.htm
46.E-Medicine: MMD
An in depth look at moyamoya disease, an introduction, clinical features, differentials, work up, treatments, medication and follow up.
URL:http://www.emedicine.com/neuro/topic616.htm
47.The Erythromelalgia Association
A non-profit organization dedicated to research and education regarding this painful disorder. Offers details about the disorder, the organization, FAQs and membership information.
URL:http://www.erythromelalgia.org/
48.Baylor College of Medicine
An article entitled: A Natural History of Cleidocranial Dysplasia.
URL:http://www.faseb.org/genetics/ashg99/f181.htm
49.Phenylketonuria Hub
Links to information and resources.
URL:http://www.genomelink.org/phenylketonuria
50.Lori and Ashley Hegi
Pictures, information, and updates about Ashley, her experiences with Progeria, and her mom, Lori.
URL:http://www.geocities.com/lori_and_ashley/
51.Agenesis of the Corpus Callosum (ACC)
Not all ACC in utero diagnoses are accurate nor correct. Here's a story without a tragic ending.
URL:http://www.geocities.com/nygblue11/2nd.html
52.Wegener's Granulomatosis
Provides a chat, forum, and links to health pages.
URL:http://www.geocities.com/wbh7777/wegen.html
53.Pemphigus hub
A brief definition of pemphigus, followed by links to overviews, research projects, case studies and images.
URL:http://www.healthubs.com/pemphigus
54.HealthWise Knowledgebase
An article about Rubinstein-Taybi syndrome, a general discussion, symptoms, causes, incidence, treatment and resources.
URL:http://www.healthwise.org/kbase/nord/nord461.htm
55.Degos Disease
Judth Calder's support network for this rare vasculitis.
URL:http://www.hodgers.com/degos/
56.Institute of Child Health
An article with an explanation of Jacobsen Syndrome.
URL:http://www.ich.ucl.ac.uk/units/mhu/fws/frames/jsoframe.htm
57.Pediatric Database
An in depth look at rubinstein-taybi syndrome beginning with a definition, on to epidemiology, pathogenesis, clinical features, investigations and management.
URL:http://www.icondata.com/health/pedbase/files/RUBINSTE.HTM
58.Tyrosinemia-11
An in depth look at this disease from Pediatric Database including investigations and management.
URL:http://www.icondata.com/health/pedbase/files/TYROSIN1.HTM
59.Pediatric Database
Offers a definition of Tyrosinemia-1, the epidemiology, pathogenesis, clinical features, investigations and management.
URL:http://www.icondata.com/health/pedbase/files/TYROSINE.HTM
60.Pediatric Database
VACTERL Association definition
URL:http://www.icondata.com/health/pedbase/files/VACTERLA.HTM
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