Friday, February 27, 2015

Shining a Light on Rare Diseases

There are nearly 7,000 diseases and conditions that are considered rare by medical authorities in the United States. Each year, thousands of Texans are among those whose lives are changed by these diseases.

A rare disease is any disease that affects fewer than 200,000 people in the United States. As a group, these diseases affect almost 30 million Americans, or nearly one in 10 people. Two-thirds of those living with a rare illness are children. Many of these diseases are serious and debilitating, have no approved treatment, and are not currently being studied by medical researchers. It is not unusual for people with rare diseases to feel “orphaned” by the health care system.

To focus attention on these diseases and the challenges the people living with them face, the National Organization for Rare Disorders is sponsoring a nationwide observation of Rare Disease Day Feb. 28. Rep. Elliott Naishtat (D-Austin) authored a resolution in the state legislature recognizing the day as Rare Disease Day in Texas. Tomorrow, patients, physicians, medical professionals, researchers, government officials, and companies developing treatments will join together to focus attention on rare diseases as a public health issue.

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