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Cystinosis Resources - Cystinosis Research Network 
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 >
Database for Rare Pediatric Disease
Madisons Foundation has compiled a database of rare pediatric diseases. Database entries describe symptoms, available treatments and additional sources of information and support.... Details >
Description of Klippel-Trenaunay Syndrome
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 >
Diagnosis of Ataxia
Being diagnosed with Ataxia can be overwhelming. This site provides a few frequently asked questions that can help you to understand ataxia better.... Details >
Disease Information: Histiocytosis
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 >
Dystonia: Find a Healthcare Professional
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 >
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 >
Ehlers Danlos Syndrome Facts
This page provides general consumer information about EDS, its symptoms, treatment, types of and manifestations, and synonyms.... Details >
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 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 >
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