ALS Is Rare, but My Husband Is Part of a Broader Rare Community

Facing the Rarefied Air of ALS with Dignity

“I don’t want to belong to any club that would have me as a member.” That sentiment, expressed by comedian Groucho Marx in 1949 about his affiliation with a particular social organization, was exactly my reaction in learning of…

Living Well On the Rare Side

The other day, I was chatting with a friend about Rare Disease Day. Wait, what? You don’t know about Rare Disease Day? Well, don’t feel bad. Last year I missed it, thinking it was just another ho-hum awareness event. But I’ve learned the value of events such as this…

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…