"There are nearly 30 million Americans-and millions more around the world-affected by rare diseases," said Peter L. Saltonstall, president and CEO of NORD. "Everyone knows someone with a rare disease. But, while many of these diseases are serious and lifelong, most have no treatment and many are not even being studied by researchers. This leaves patients and families without hope for a better future."
A rare disease is one that affects fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans.
World Rare Disease Day was launched in Europe four years ago and last year was observed in 46 nations. It is always observed on the last day of February.
Cerebral Palsy (CP) is a rare disease. I continue to learn more and more about CP as the doctors appointments contiune. You never think that your child will be the one with a "rare disease" but to me Elizabeth is perfect. We will do whatever it takes to make her a wonderful life.
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