Sunday Is Rare Disease Day
Vicki S., of Madison, Kentucky, suffers from a rare disorder called “familial exudative vitreoretinopathy,” or FEVR. It’s a genetic progressive eye disease caused by a defective gene. Mercy Medical Airlift provided flights for Vicki and her brother, also a FEVR patient, to the National Institutes of Health to participate in a clinical study.
“Alone we are rare. Together we are strong.” That is the motto for Rare Disease Day on February 28. Ten percent of Americans suffer from a rare disorder, with many living lives of unimaginable pain, financial hardship, and social isolation.
The day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD) and in Europe by Eurordis (Rare Diseases Europe). It’s designed to bring heightened awareness to the fact that rare diseases are a public health issue. Also, it is to “celebrate the special relationship between patients and rare disease researchers.”
Visit www.RareDiseases.org to learn more. Read the patient stories. Read about the work of dedicated researchers. We owe it to our fellow human beings in the pain community who have much to teach the rest of us.
