Rare Disease Day is Feb. 29

Feb. 29 is the rarest day on the calendar, and I invite The Sun News readership to do something meaningful to mark the day.

On the last day of February, millions of people around the world observe Rare Disease Day. My son, TJ, was born with a rare, life-limiting genetic disease known as Peroxisome Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD). Approximately 50 percent of people affected by rare diseases are children, and 30 percent of children with rare diseases do not live to see their 5th birthday. In fact, rare diseases are responsible for 35 percent of deaths in the first year of life.

Families often have trouble getting access to life-saving medical treatment or other services because their insurance, medical, elected and other officials may not be familiar with their diseases.

Raising public awareness makes a difference. It gives families hope and can lead to new, life-saving treatments. I encourage everyone reading this to get involved by visiting the U.S. website (www.rarediseaseday.us) to learn what you can do to support those impacted by rare diseases.

This story was originally published February 29, 2016 at 8:31 AM with the headline "Rare Disease Day is Feb. 29."