About Primary Hyperoxaluria
Online information for consumers about primary hyperoxaluria, a rare metabolic disease caused by the liver making too much oxalic acid which is excreted in the urine.... Details >
Oxalosis and Hyperoxaluria Foundation |
Behcet's Disease Information
A general overview of Behcet's disease that includes a description and information about treatment, prognosis and research. A list of organizations where users may obtain additional information and se... Details >
National Institute of Neurological Disorders and Stroke, National Institutes of Health |
Creutzfeldt-Jakob Disease (CJD)
Also available in: Spanish
A general overview of Creutzfeldt-Jakob Disease (CJD) that includes a description and information about treatment, prognosis and research. A list of organizations where users may obtain additional inf... Details >
National Institute of Neurological Disorders and Stroke, National Institutes of Health |
Ectodermal Dysplasia: Family Services and Programs
Browse this page for information about national and regional family support conferences and workshops, participants directory, and referral services for EDs.... Details >
National Foundation for Ectodermal Dysplasias |
Ehlers-Danlos Information Page
Users can access a variety of topics related to Ehlers-Danlos syndrome from this web site. Includes information about the different types and manifestation of the disorder as well as coping skills.... Details >
Ehlers-Danlos National Foundation |
Ehlers-Danlos Syndrome (EDS): An Introduction
This is the home page of the EDS support group for patients and families. The page describes the signs and symptoms of EDS, a heterogeneous group of heritable disorders of connective tissue, characte... Details >
Nonprofit/Professional Entity--Follow the Resource URL for More Information |
Facts About Histiocytosis
This online mini-fact sheet provides basic information about histiocytosis, a very rare disorder which affects an estimated 1 in 200,000 children and adults annually.... Details >
Histiocytosis Association of America |
Facts About Langerhans Cell Histiocytosis
Visit this page for online information about this rare disorder, previously known as Histiocytosis-X, that primarily affects children.... Details >
Histiocytosis Association of America |
Freeman-Sheldon Syndrome
This online brochure provides basic information for consumers about this rare genetic condition which characteristically includes a small "whistling" mouth, a flat mask-like face, club feet, joint con... Details >
Freeman-Sheldon Parent Support Group |
Genetic and Rare Conditions: Support Groups & Information Page
Professionals, educators, or individuals seeking information on genetic conditions or birth defects can use this directory to locate national and international organizations, or contact a genetic coun... Details >
Educational Institution--Follow the Resource URL for More Information |
