“Being healthy is the crown that only the sick can see.” Hasan Minhaj
Health and access to health care are fundamental human rights. As a reminder not to take good health for granted, today we celebrate Rare Disease Day, an event that takes place every February 28th (or in leap years, February 29th, the rarest day of the year).
Rare Disease Day is so much more than a one-day event. It’s a rallying cry for a global movement of people around the world working toward health equity and access to diagnoses and treatments for people living with rare diseases. A disease is considered rare in the U.S which affects fewer than 200,000 people. The example I know best is Smith-Lemli-Opitz syndrome, the disorder my son Jukie was born with.
Since its beginning 15 years ago, Rare Disease Day has helped to build a diverse International community of people with many differences in diagnoses and experiences, but united in purpose. Through sharing the experiences of people living with a rare disease, together we hope to change and improve the lives of 300 million people affected worldwide, as well as the lives of their families, caregivers, and supporters.
A day like today can help people like Jukie feel less disconnected from their local and national communities. Alone we are rare. Together we are strong.
To learn more about Smith-Lemli-Opitz syndrome, visit Smith-Lemli-Opitz Foundation
