I am writing to alert your readers to a special day that's coming up soon. On the last day of February, millions of people around the world will be observing World Rare Disease Day. There will be activities across the U.S., throughout Europe, in Canada, in Australia, and China and elsewhere to focus attention on rare diseases as a public health issue.
In the U.S., a disease is considered rare if it affects fewer than 200,000 people at any given time and there are over 7,000 rare diseases affecting 30 million Americans. Some rare diseases such as Lou Gehrig's disease (ALS) are well known to the public. However, many others are not, and you can imagine the loneliness of having a disease that most people have never heard of, that has no treatment, and that is not even being studied by any medical researchers.
Many rare diseases are serious and/or chronic. Many are life-threatening. Even so, people with rare diseases often have trouble accessing the medical or other services they need because those making the decisions are not familiar with their diseases.
Nearly 30 million Americans (about 1 in 10) have rare diseases. Thousands of residents of Pennsylvania are affected by rare diseases. About half of the people affected by rare diseases in the U.S. are children, including my granddaughter, Naomi, who has Rett syndrome; since many rare diseases are genetic. All of us know someone with a rare disease. I encourage your readers to visit the U.S. Rare Disease Day website (www.rarediseaseday.us) on or before February 29, 2012, to read about Rare Disease Day activities in the U.S.