community

When I was diagnosed with neuromyelitis optica (NMO) in 2012, the U.S. Food and Drug Administration (FDA) hadn’t yet approved any medications specifically to treat this disease. However, doctors could select various therapies to help patients prevent or deal with attacks. When NMO patients had an attack, doctors treated…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

I was born and raised in Cuba, playing outside, running, and enjoying my friends. In my healthy teen years, I didn’t think I’d ever become chronically sick, much less stop walking. However, everything changed when I watched a movie about a boy named Lorenzo who suffers from a degenerative…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…