Rare Disease Legislation Advancing at National, State Level

The 21st Century Cures Act, an ambitious piece of legislation of great concern to the rare disease community, passed the House last year only to stall the Senate. Now it’s back on the radar. The legislation is moving forward again, but this time in pieces. Separately in California, proposed legislation can greatly accelerate the process that tests are added to the list of newborn screening diagnostics that are performed. We spoke to Max Bronstein, senior director of public and government relations for the Everylife Foundation for Rare Diseases, about the developments on the legislative front, what the outlook is, and why these issues matter to the rare disease community.