What is a Rare Disease?

It’s Rare Disease Week 2020, which ultimately culminates with Rare Disease Day on February 29th (the rarest of days!). In the United States, a rare disease is exactly what it sounds like, a disease that is…well… rare. Specifically, a rare disease is one that affects fewer than 200,000 people. The reason we care so much...
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How Do You Value Your Life With Cystic Fibrosis?

The Institute for Clinical and Economic Review (ICER) is back at it again. Just last week, the not-so-independent watchdog for all things drug coverage in the United States released its draft report for “Modulator Treatment for Cystic Fibrosis: Effectiveness and Value.” As a refresher, ICER uses a mathematical model called Quality-Adjusted Life Years (QALY) to...
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