People with Rare Diseases Are Humans, Not Commodities

If you keep up with CF research, you may have seen the news about Phase 3 of the triple combination Vertex therapies. In these results, patients had a robust lung function boost after trialing a triple combination therapy treatment. More importantly, these results were tested in a broad population…

Cases of Injustices, Humiliations, and Sorrows

I’m a positive guy, I swear it. But I’m exhausted and need a good vent. *** When I pay about $100 per week for prescription medicine, I feel punished for having a genetic defect. I loathe that my body actively tries to murder itself against the…