Living with a rare disorder is especially difficult because the funding for research and the availability to services is very limited. The National Organization for Rare Disorders (NORD) exists to help bring together the voluntary health organizations that serve people with rare disorders. They are sort of a clearinghouse of information and patient advocacy and support, providing an array of services and support to both patients and their families as well as health workers, and researchers. Their first successful campaign resulted in Congress passing the Orphan Drug Act, a federally funded incentive for companies to develop drugs for rare disorders. It was founded in 1983 by Abbey Meyers, along with individuals with rare diseases leaders of rare disease support groups. NORD ‘s operations include funding research on treatment and cures for rare diseases; lobbying for legislation to benefit the rare diseases community (in addition to the Orphan Drug Act, NORD has helped bring about legislation on publicizing clinical trials on the Internet, and on the development of medical devices); spreading information about rare diseases; and helping individuals with rare diseases afford medication and treatment. 
Website: http://www.rarediseases.org/
Some situations are rare
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