It was brought to my attention (through a Facebook posting) yesterday by my acquaintance (Catherine C) that Rare Disease Day is being observed on February 28th this year.
According to a number of sources, including NORD (The National Association for Rare Disorders), "In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are more than 7,000 rare diseases affecting 25-30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children."
She advocates for this cause due to the fact daughter has a rare disease (Klippel-Trenaunay Syndrome AKA Fibro-Adipose Vascular Anomaly OR Kawasaki Disease). As it happens, before I saw Catherine's posting, I had a very unpleasant experience re my rare disease (Neurofibromatosis).
