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Learning more about rare diseases in Oregon
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Learning more about rare diseases in Oregon


In the United States, a rare disease is any disease that impacts 200,000 or fewer people. Currently, there are anywhere from 25 million to 30 million Americans who have a rare disease. This means that as many as 1 in 10 people are afflicted with one of these conditions. Since rare diseases can be difficult to pinpoint, they are often misdiagnosed by doctors.

Those who are diagnosed with a rare condition may not have many treatment options. In some cases, this is due to limited funding for research into conditions that affect few people. However, thanks to the Orphan Drug Act of 1983, there have been more than 500 orphan drugs approved by the FDA. The term “orphan” refers to any drug that is commercially undeveloped because of its lack of profitability.

Clinical trials as well as patient registries are important sources of information for both patients and medical professionals. The more data available about a particular condition, the easier it may be to learn more about it and come up with a cure. However, patients are urged to resist signing up for clinical trials before reading about the study and possible side effects.

If a condition gets worse because of a negligent physician, a patient may be entitled to compensation. An attorney may be helpful in pursuing a medical malpractice suit or attempting to negotiate a settlement outside of court. It may be possible to win compensation for medical bills, lost wages and lost future earnings. Attorneys might be able to prove negligence through a review of patient records or testimony from witnesses.