Do you know anyone with a rare disease? I bet you do, but maybe you don’t even know it, or recognize it’s a rare disease. I have a few friends with rare diseases, and a friend of mine has a little boy with a rare disease that is so rare it doesn’t even have a name.
Most of us have daily aches and pains, colds, maybe even a disease that has been identified and can be treated effectively with medicine. Some have diseases that are very noticeable to others. But there are also many who live with diseases that doctors can’t identify or effectively treat because they are so rare they don’t know enough about it. Rare diseases are a real concern.
Did you know February 28th is Rare Disease Day? Not a special day that is on the typical calendar, I know. It is a day celebrated yearly in nearly 60 countries by those with rare diseases sharing their stories. As shared on the Rare Disease Day USA website:
On this day, millions of patients and
their families will share their stories to focus a spotlight on rare
diseases as an important global public health concern.
“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.
So why am I sharing this? Simply to bring awareness to Rare Diseases. Maybe bring a little more sensitivity to the issue or spur you on to support someone with a rare disease.
You can go here to read more or for a printable flyer or other links to information.
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