News
Rare diseases: Not a rare health issue
By Peter L. Saltonstall and Yann Le Cam
Peter Saltonstall is President and CEO of the National Organization for Rare Disorders (NORD). Yann Le Cam is CEO of the European Organization for Rare Diseases (EURORDIS).
On February 28, 2009, millions of people around the world will observe “Rare Disease Day”. This global event will celebrate the spirit of patients and families coping with rare diseases, as well as the dedication of those pursuing treatments or cures.
On that day, news stories, videos, and blogs will provide a glimpse of what it’s like to have a rare disease, what special problems are encountered by those affected, and what’s being done to better understand and treat these conditions.
The purpose, aside from simply raising awareness, is to focus a spotlight on the public health implications since rare diseases are far more prevalent, when considered together, than most people realize.
