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This page contains links to other organizations of interest to Cystinosis patients, families, and friends. The links are organized into categories, including education, support, and medical and health... Details >
Madisons Foundation has compiled a database of rare pediatric diseases. Database entries describe symptoms, available treatments and additional sources of information and support.... Details >
An overview of the Klippel-Trenaunay (K-T) syndrome, a rare congenital malformation that may include a port-wine stain or "birthmark" (cutaneous capillary malformations), soft tissue and bony hypertro... Details >
Being diagnosed with Ataxia can be overwhelming. This site provides a few frequently asked questions that can help you to understand ataxia better.... Details >
This site provides basic information about histiocytosis, a very rare disorder which affects an estimated 1 in 200,000 children born each year in the United States. This illness is so rare, there is ... Details >
The Dystonia Foundation and the National Spasmodic Dysphonia Association maintain a directory of healthcare professionals who specialize in treatment of the various forms of dystonia; this list is con... Details >
Browse this page for information about national and regional family support conferences and workshops, participants directory, and referral services for EDs.... Details >
This page provides general consumer information about EDS, its symptoms, treatment, types of and manifestations, and synonyms.... Details >
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 >
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 >
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