I like to inform your readers to a special day that's coming up soon. On the last day of February, millions of people around the world will observe Rare Disease Day. There will be activities across the U.S., throughout Europe, in Canada, in Australia, in 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. 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.
Our son, Ethan, has been battling a rare disorder termed Bartter Syndrome for the past 10 years. We are running a nonprofit foundation for the rare kidney disease to educate and raise awareness about this syndrome. Anyone who needs a hand can find us on www.barttersyndromefoundation.org.
Many of us know someone with a rare disease. I encourage your readers to visit the U.S. Rare Disease Day website, rarediseaseday.us, on or before Feb. 28.
To read about Rare Disease Day activities in the United States and the global website raredisease-day.org to learn what's being done around the world.