The significance of Rare Disease Day, and why it matters to you

Rare Disease Day 2016

Today is Rare Disease Day, and I couldn’t let the day pass without acknowledging it. A disease is considered rare in the United States if it affects fewer than 200,000 people. About 1 in 10,000 people have Stargardt disease, so that means there are approximately 33.000 people with Stargardt disease in the United States. And Stargardt disease is only one of about 7000 rare diseases. Chances are you may know someone with a rare disease, whether you realize it or not.

Some common problems rare diseases face are lack of funding and lack of quality scientific research. Furthermore, it can be difficult to raise awareness of such diseases because so few people have heard of them and, as a result, have trouble relating to the life-altering effects these diseases can have.

It is for these reasons, and many more I will continue to share with you through this blog, that I ask you to consider participating in the national signature fundraising event of the Foundation Fighting Blindness: the VisionWalk. Join a team (my team!); donate money, goods, or services; or volunteer your time. If you’re interested in participating in any way, please reach out to me and I’ll put you in touch with the appropriate people, or visit my individual page.

Please consider helping in any way you can. Here’s the details for the Jacksonville VisionWalk, but if you aren’t local, there are Walks all across the country!


Jacksonville VisionWalk

Date: Saturday, May 14, 2016
Time:  8 AM Registration and Walk Begins at 9 AM
Location: University of North Florida, Jacksonville, FL


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I'm a thirty-something housewife who enjoys reading, yoga, and taking advantage of all the cool stuff Jacksonville has to offer. I'm also legally blind due to a retinal degenerative disease called Stargardt disease.

One thought on “The significance of Rare Disease Day, and why it matters to you”

  1. The rare diseases that pique my curiosity are the ones no doctor can diagnose such as Morgellon’s disease. And the SARS pandemic of the early 20th century…👀

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