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This document provides information about Cystinosis, a rare disease that primarily affects children and a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs ... Details >
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 >
This site provides information about the disease and Features of Schwannomatosis.... Details >
The Acid Maltase Deficiency Association, A M D A, was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe's Disease.... Details >
This site provides a database to a comprehensive listing of groups and individuals who meet to discuss Ataxia related issues. ... Details >
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
This page is a backgrounder on cavernous malformation, a rare disorder of the capillaries and smallest veins in one part of the brain. The disorder occurs when a blood-filled mass resembling a tumor, ... Details >
National Institute of Neurological Disorders and Stroke, National Institutes of Health
This site provides a link to major characteristics of fragile X syndrome, including physical and behavioral features.... Details >
This site contains information about the diagnosis, treatment modalities, quick facts and more about Congenital Adrenal Hyperplacia (CAH).... Details >
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
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 >
Nonprofit/Professional Entity--Follow the Resource URL for More Information
Information designed to assist newly diagnosed patients with Epidermolysis Bullosa (EB), a group of rare, hereditary skin diseases. The page contains a brief description of EB, resources for patients... Details >
This site is designed as a place to share stories about the children and young adults with Cystinosis. ... Details >
This document presents frequently asked questions about dystonia, a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal... Details >
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 >
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
This site provides a list of indications for when a Genetic testing for Fragile X should be considered.... Details >
Also available in: Spanish
A general overview of Guillain-Barre syndrome that describes the disorder and its treatment, prognosis, and research information. A list of organizations that may provide additional information and re... Details >
National Institute of Neurological Disorders and Stroke, National Institutes of Health
This site includes information about what Hyperaldosteronism is, what causes it, how is diagnosed and treated.... Details >
This page provides a list of organizations in NORD's database.... Details >
A general overview of Joubert syndrome that includes a description of the disorder, and treatment, prognosis and research information. Suggested reading for more in-depth information and a list of ref... Details >
National Institute of Neurological Disorders and Stroke, National Institutes of Health
Online information center provides resources, articles and reports related to joubert syndrome. Feeding & oral motor, hearing, legal help, medical journal articles and therapy are addressed.... Details >
Links to federal agencies, support groups and other nonprofit websites that provide information and resources for joubert syndrome.... Details >
Visit this page for online information about this rare disorder, previously known as Histiocytosis-X, that primarily affects children.... Details >
Links to support services, organizations, genetic societies, treatment clinics and other resources related to Laurence Moon Bardet Biedl Syndrome.... Details >
Educational Institution--Follow the Resource URL for More Information
Basic consumer information about Laurence Moon Syndrome including a list of synonyms and resources where you can get additional information.... Details >
Basic consumer information about Lowe's Syndrome. This page also contains a list of synonyms and resources where users can get additional information.... Details >
The selected resources included in this list may help individuals understand more and find other links to organizations that provide support, materials and practical information related to this topic.... Details >
This site has a listing of medical facilities that have personnel on staff with experience in dealing with neurofibromatosis. Some facilities have established NF Clinics; others have resources availa... Details >
A fact sheet about the risk factors, symptoms, diagnosis, and treatment of mesothelioma.... Details >
Also available in: Spanish
List of information and publications related to neurological diseases available from the National Institute of Neurological Disorders and Stroke, National Institutes of Health (NINDS) Office of Scient... Details >
National Institute of Neurological Disorders and Stroke, National Institutes of Health
Dysautonomia News is a quarterly publication of the Dysautonomia Information Network, a nonprofit organization dedicated to providing dysautonomia patients with the latest findings in research and tre... Details >
This site provides information about The Genetic and Rare Diseases Information Center (GARD) which was established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseas... Details >
Also available in: Spanish
This page welcomes to the Genetic and Rare Diseases Information Center. The Center employs information specialists to answer in English or Spanish questions from the general public about genetic and r... Details >
Search from more than 2,000 patient organizations and other sources of help for people with rare diseases. ... Details >
This site provides a link to emotional and educational support and information about local programs and services for individuals with FXS.... Details >
This page offers information about the type of programs that are offered to provide an opportunity for people not only to cope with dystonia, but also to reach beyond the disorder until a cure is foun... Details >
This is a fact sheet designed to offer suggestions to help parents prepare for planned or emergency operations for children with osteogenesis imperfecta. ... Details >
This searchable database has reports on more than 1,500 rare diseases.... Details >
The Rare Diseases Clinical Research Database was developed by the Office of Rare Diseases at the National Institutes of Health. This database provides you information about ongoing or planned research... Details >
This page links to information about rare diseases, including definitions, causes, treatments, and publications.... Details >
Browse this site for a definition of terms related to genetic and rare disorders. These terms and their definitions have been developed from glossaries prepared by U.S. Congressional Office of Technol... Details >
This is the Shwachman-Diamond Syndrome Foundation home page, formerly known as: Shwachman-Diamond Syndrome International.... Details >
Shwachman-Diamond Syndrome is a rare disease which mainly involves the pancreas, bone marrow and skeleton, but other organs may also be affected. ... Details >
This site provides basic information about Adrenal Hormones, Hydration, FDA MedWatch Program, Emergency Contact & Identification, and more topics related to Adrenal Disease.... Details >
This site provides answers to patients and their families about amyloidosis -- a rare, bone marrow disease in which the heart, kidneys, nervous system and gastro-intestinal tract are most often affect... Details >
Educational Institution--Follow the Resource URL for More Information
This site provides important information about the disease and its symptoms, including additional links to know more.... Details >
This site answers this and other related questions about Fragile X. ... Details >
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels which affects about one in 5,000 males and females from all racial and ethnic groups. HHT is sometimes referred t... Details >
Hereditary Hemorrhagic Telangiectasia Foundation International, Incorporated
Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. Check out this page for more information about this diso... Details >