Welcome to the official rare disease educational website developed by The National Organization for Rare Disorders. By raising awareness of rare diseases among physicians, clinicians and other medical professionals, NORD strives to help patients obtain earlier diagnosis and appropriate treatment. Learn more >
A rare disease is one that affects fewer than 200,000 Americans at any given time.
According to the National Institutes of Health, there are between 6,000 and 7,000 rare diseases affecting from 25 to 30 million Americans.
Approximately 50% of the people affected by rare diseases are children.
Since 1983, more than 2,200 rare disease treatments have entered the research pipeline and more than 360 have been approved for marketing.
About The Guides
NORD Online Physician Guides are a free service of the National Organization for Rare Disorders (NORD) and its medical advisors.
For many years, patients and families affected by rare medical conditions felt alone and unheard. That is no longer the case. Advances in the body of knowledge related to rare diseases, and a growing recognition that these diseases collectively affect millions of Americans, are driving significant progress in the development of diagnostic tools and treatments.
The purpose of the NORD Online Physician Guides is to provide a resource for clinicians about specific rare disorders to facilitate the timely diagnosis and treatment of their patients. Family physicians, pediatricians and other primary care providers play an important role in early identification and long-term management of patients with rare diseases. It is important for specialist and generalist alike to remain as current as possible in awareness of rare medical conditions.
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