'Rare' disease awareness is important

As co-chair of the Assembly Rare Disease caucus, I recognize the struggle of patients and their families living with rare diseases. Among these are almost 7,000 diseases and conditions considered rare, with 80% of those considered ultra rare.

By definition, a disease is considered rare when it affects fewer than 200,000 people. Since only a relatively small number of people are involved, treatments for these diseases can be limited, have sky-high costs or are completely unavailable. That’s where orphan drugs come in.

In 1983, President Ronald Reagan signed the Orphan Drug Act to encourage deve...