Taking a leap 
for rare disease

I am writing to alert readers of a special, international effort that’s happening on Leap Day. Millions of people around the globe will observe World Rare Disease Day on Feb. 29 to focus attention on rare diseases as a public health issue.

In the United States, a disease is considered rare if it affects fewer than 200,000 people. Some rare diseases such as Lou Gehrig’s disease (ALS) are well known to the public, but many others like retinitis pigmentosa, which affects me and my family are not. You can imagine the challenges of having a vision-robbing disease that most people have never heard of and that currently has no cure. Imagine not recognizing faces you have known for years!

Luckily, the Foundation Fighting Blindness funds cutting-edge research that will lead to treatments for blinding retinal diseases like retinitis pigmentosa and is working to raise awareness through World Rare Disease Day and ongoing public education outreach. Their efforts give me and my family hope!

Nearly 30 million Americans (about 1 in 10) have rare diseases, so we all likely know someone affected.  I encourage readers to visit www.FightBlindness.org/RDD to learn more about World Rare Disease Day and to see how affected individuals are expressing themselves.

Kent Harmon

Princeton