Roughly 7,000 rare diseases/disorders have been identified as affecting the human race. Because they are rare, it can be a real challenge for a person to be accurately diagnosed. Finding effective treatments, especially medicine, can also be a challenge—and for the same reason: rareness.
Some students with rare disorders may require services under IDEA and special education depending on how it affects their ability to access their education. Since there is not a specific rare disorder category, the student would have to qualify under one of the thirteen specified categories.
(Part of this information is from the Center for Parent Information and Resources.)
It’s very helpful to read more about rare disorders. The following are links to additional information:
Center for Parent Information and Resources
CIPR has provided a fact sheet about rare disorders category and resources for information.
NORD’s Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. This is not a comprehensive database since there are nearly 7,000 diseases considered rare in the U.S
Genetics and Rare diseases Information Center includes a short video about how to pursue information about rare and undiagnosed disorders.
Students Living with a Genetic Condition: A Guide for Parents
An excellent resource for parents whose children have genetic conditions and are in school is provided by the Genetic Alliance
Recognizing that adequate drugs for rare disorders had not been developed in the U.S., and that drug companies would actually incur a financial loss in developing drugs for rare conditions, the U.S. Congress in 1983 passed the Orphan Drug Act. The Orphan Drug Act offers incentives to induce companies to develop drugs (and other medical products) for the small markets of individuals with rare disorders (in the U.S., 47% of rare disorders affect fewer than 25,000 people).