High drug costs: the tale of 4 women
In 2016, Berna Heyman testified before a U.S. Senate committee about her personal experience with sudden and dramatic increases in drug prices. She was forced to switch drugs to treat her [...]
1983: The 35th Anniversary
This is the 35th anniversary of 1983 – an important year in my life. And, for anyone living with a rare disease. It was a year full of historic landmarks, too: the [...]
How Martinis Led to my Rare Disease Diagnosis
The night I drank my first martini would also be my last. My husband says the martinis saved my life. I’m not sure about that, but by the end of that weekend [...]