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There are over 10,000 rare diseases that together affect more than 30 million Americans. NORD is dedicated to the identification, treatment, and cure of these diseases through comprehensive education, advocacy, research, and service programs.
Creutzfeldt-Jakob disease (CJD) is an extremely rare, degenerative brain disorder. It affects about one in every million people per year worldwide. People with CJD typically develop symptoms later in life and may show changes in behavior, memory troubles, lack of coordination and vision problems.
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.
List of Rare Diseases; Gene Therapy for Rare Disease; Find Clinical Trials & Research Studies; For researchers. Request for Proposals; Research Grant Programs; Data Standards for Rare Diseases; For clinicians. Resources for Patients; Find a Rare Disease Care Center; Continuing Medical Education (CME) Connect. IAMRARE ® Program Powered by NORD
Medical genetic testing is often an important part of the diagnostic work-up (approximately 80% of rare diseases are genetic). Knowing the underlying genetic cause may make you eligible for certain research opportunities or clinical trials.
Rare Disease Facts & Statistics. NORD’s Rare Disease Video Library provides brief introductions to rare disease topics for patients and caregivers. NORD collaborates with medical experts, patient organizations and videographers to develop the videos, which are made possible by individual donations, educational grants, and corporate sponsorships.
Asherson’s syndrome is an extremely rare autoimmune disorder characterized by the development, over a period of hours, days or weeks, of rapidly progressive blood clots affecting multiple organ systems of the body.
Fibrodysplasia ossificans progressiva (FOP) is an extremely rare genetic connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as the ligaments, tendons and skeletal muscles.
KAT6A syndrome is an extremely rare genetic neurodevelopmental disorder in which there is a variation (mutation) in the KAT6A gene. Variations in the KAT6A gene can potentially cause a wide variety of signs and symptoms; how the disorder affects one child can be very different from how it affects another.
Congenital myopathy (CM) is an extremely rare, inherited disease that affects the muscles (myopathy) and is characterized by the lack of muscle tone or floppiness at birth. There are several different subtypes of congenital myopathy and many are caused by changes (mutations) in specific genes.