A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Friday, February 28, 2014

Rare Disease Day - February 28

There are many different days in the year for different causes. February 28 is Rare Disease Day.

World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families. (source)

Here are 5 facts about rare diseases:

1. According to the U.S. Food and Drug Administration, a rare disease is one that affects fewer than 200,000 Americans at any given time.

2. According to the National Institutes of Health, there are between 6,000 and 7,000 rare diseases affecting from 25 to 30 million Americans.

3. 80% of rare diseases have identified genetic origins  and 50% of rare diseases touch children. (source)

4. Patients with rare diseases are frequently misdiagnosed or are undiagnosed. (source)

5. Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease (source)

If  you see people walking around sporting a denim ribbon, ask them which rare disease they are supporting.

Please take a minute to click on the source links are read a bit more about rare diseases and how you can help spread awareness.   To learn more about Niemann Pick Disease, the disease I support, go to the National Niemann Pick Disease Foundation, the Mayo Clinic, and the Parseghian Foundation.


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