On the last day of February, millions of people will observe World Rare Disease Day. Activities are planned across the U.S., throughout Europe, in Canada, Australia and China to focus 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, but many others are not. You can imagine the loneliness of having a disease that most people have never heard of, that has no treatment, and that is not being studied by medical researchers.
Many rare diseases are serious and/or chronic. Many are life-threatening. People with rare diseases often have trouble accessing medical or other services because those making the decisions are not familiar with their diseases. This is the reality for many people with Friedreich’s ataxia, an aggressive neurodegenerative disease that debilitates people of all ages, robbing them of their ability to walk, see, speak and hear and cutting short their life expectancies.
Our daughters, Lindsey, 20, and Emily, 17, have been afflicted with this rare disorder. With the help of friends and family, both Parrish girls have sponsored a Muscular Dystrophy Association walk-a-thon for the last eight years, raising more than $200,000 towards research for Friedreich’s Ataxia.
Nearly 30 million Americans (about 1 in 10) have rare diseases. To learn more, visit the U.S. Rare Disease Day website (www.rarediseaseday.us) and the global website (www.rarediseaseday.org) on or before Monday.