Whois & Analysis for rarediseases.org

The National Organization for Rare Disorders (NORD) is an American non-profit organization aiming to provide support for individuals with rare diseases by advocating and funding research, education, and networking among service providers.

It was founded in 1983 by Abbey Meyers, along with individuals with rare diseases leaders of rare disease support groups, and it is a 501(c)3 tax exempt organization.

Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and carers.

The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders.

The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients.

Some patient advocates work for the institutions that are directly responsible for the patient's care.

A rare disease is any disease that affects a small percentage of the population.

Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear.

Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.

With a single diagnosed patient only, ribose-5-phosphate isomerase deficiency is considered the rarest genetic disease.