By Shen Gao
Staff Writer
This past Monday marked the worldwide observance of Rare Disease Day. It is observed on the last day of February every year, with this year’s date being the rarest of them all — Feb. 29.
Rare Disease Day was first launched in 2008 by the European Organization of Rare Diseases (EURORDIS) and its Council of National Alliances. It was created with the goal of educating policymakers and the public about rare diseases in order to help garner research funds and support for patients and their families.
Since its creation, increasingly more countries have participated in the recognition and celebration of this day, with participants in over 85 countries and regions as of this year.
Every year, Rare Disease Day is accompanied with a special theme and slogan. The theme for this year was “Patient Voice,” and the slogan was “Join us in making the voice of rare diseases heard.”
In the U.S., a disease is considered “rare” if it affects fewer than 200,000 people at any given time. In Europe, a rare disease is defined as any disease that affects fewer than 1 in 2000. It is estimated that about 30 million people in the E.U. suffer from a rare disease.
There are over 6,000 rare diseases to date. They are characterized by a range of symptoms that vary not only from disease to disease but also patient to patient, even those suffering from the same disease. About 80 percent of these diseases are genetic, while others result from infections, allergies, and environmental causes, or they can be degenerative.
It is important to note that the very nature of rare diseases creates a variety of problems for patients and doctors alike. Delays in diagnosis and/or misdiagnosis are often associated with rare diseases, due to the lack of scientific information as well as expertise available.
For many patients, the quality of life is dramatically reduced by the onset of a rare disease. These diseases can be chronic, progressive, degenerative, and life-threatening. Most of these rare diseases identified are often without cures, which only adds to the suffering.
You can find out more about Rare Disease Day at www.rarediseaseday.org
