Many CLS members deliver progress and treatments to address rare diseases that impact up to 30 million Americans. Learn more about what CLS members are doing around rare disease and drug development, what the future holds for advancements in this space and how we can improve access to innovative rare disease treatments.

Encapsulating the Future of Rare Diseases

Policy considerations for advancing rare disease therapies after the IRA

Realizing Potential through Rare Disease Education

The promise of new technologies to treat rare diseases will be realized only if we revolutionize our regulatory approach

CLS D.C. Fly-In Recap

This week, CLS’s Board of Directors took to Capitol Hill for meetings with the CA delegation as part of our annual fly-in. Board members, accompanied by CLS’s federal team, met with more than 20 legislators to advocate for restoring the immediate expensing of R&D, ORPHAN Cures Act, PBM reforms, coverage of breakthrough medical technologies, and changes to the fixing the “pill penalty.”

Included in the Fly-In activities were industry discussions with Congressman Adam Schiff and BIO’s new President and CEO, John Crowley about where the life sciences industry is headed, global innovation and potential for artificial intelligence in healthcare.

CLS also hosted our annual Spring Visionary Awards Reception, where we honored select Members of Congress for their leadership in advancing policies to promote life sciences research, investment, and innovation.