LUBBOCK, Texas (KAMC) – Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases.
This year it happens to fall on February 29, Leap Day.
Hundreds of patient organizations from countries and regions all over the world hold awareness-raising activities on or around the day.
One such rare disease is KBG, an immune system disorder that causes many patients suffer seizures and developmental issues.
Only fifteen hundred people in the world have been diagnosed with KBG.
Thomas Rodriguez and his dad have a rare genetic syndrome, KBG.
Thomas’ mother, Stephanie Rabon, said “two in one family makes it even more important to us that people understand there’s a lot more that goes on behind the scenes.
She also said, “we’re grateful so many doctors and nurses that care for them. We want to raise awareness, showing it’s not so far stretched they’re not alone.”
If you’d like to donate to the KBG Foundation click here.
