Editor:
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., Europe, Canada, Australia, 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. Nearly 30 million Americans (about one in 10) have rare diseases.
Some rare diseases such as Lou Gehrig's disease (ALS) are well known to the public.Many others are not. 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, chronic or 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.
I encourage your readers to visit the U.S. Rare Disease Day website (www.rarediseaseday.org/country/ca/canada) and the Global Genes Project (www.facebook.com/globalgenesproject).
As someone who has had a rare disease my entire life (I was diagnosed at age nine with Mixed Connective Tissue Disease and am now 35), it means a lot to me to see our community showing their support for this event.
Jennifer M. Oliver
Sechelt
