• Twitter Widget


Rare Disease Day

Today is Rare Disease Day where countries around the world recognize the challenges that those afflicted with a rare disease face. The National Institute of Health considers a disease rare if it affects fewer than 200,000 people. It may be surprising to some, but 1 in 10 Americans currently live with a rare disease. However, out of the 7,000 known rare diseases, less than 400 have FDA-approved treatments.

I recently met with a group of Minnesotans whose family members had been afflicted with a rare disease. It was encouraging to meet young people like Eva and Themis (pictured below) who are advocating on behalf of such an important issue. They came with their parents and shared shared their stories of the obstacles their loved ones have faced due to a rare disease.

Erica and Philip Barnes started a foundation, Chloe’s Fight, which is raising critical funding for research and development aimed at these diseases. It’s important to support and empower the medical community to find cures and treatments that help patients. While more common afflictions may get more attention, we can’t forget about people suffering from rarer and lesser known diseases.

On February 28, people around the United States are wearing clothes that are ‘rare’ and unique to recognize the 30 million Americans living with a rare disease. You can see me sporting my ‘rare’ tie in the picture below. I’m happy to support such an important cause!