For Rare Disease Day, Feb. 28, organizations around the world are gearing up to raise awareness for the public and policy-makers to research debilitating disorders and diseases that don't get as much national attention as more common ailments.
In the United States, a rare disease is defined as one that affects fewer than 200,000 Americans. There are more than 7,000 rare diseases in the country in the U.S., affecting 30 million people. Two-thirds of patients with rare diseases are children.
"Everyone knows someone with a rare disease," says Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD). "While many of these diseases are serious and lifelong, most have no treatment and many are not being studied by researchers."
From NORD, keep clicking to meet some amazing Americans raising awareness as part of the Handprints Across America for Rare Disease Day 2013...
The disease typically is diagnosed in childhood between the ages of two or three, but can appear at any age, according to NIH. An estimated one to two in 100,000 people have the disease.