NORD is encouraging its Member Organizations and others in the rare disease community to join us in advocacy for proposed legislation to accelerate the development of treatments for patients with rare diseases and others with unmet medical needs.
Please visit the Legislative Action Center on the NORD website to quickly and easily submit letters to your representatives in Congress on behalf of the FAST Act (Faster Access to Specialized Treatments, H.R. 4132) in the House and the TREAT Act (Transforming the Regulatory Environment to Accelerate Access to Treatments, S. 2113) in the Senate.
Earlier today, NORD hosted a teleconference for its Member Organizations to discuss the FAST Act.
Guests on the call were Thomas Power, Legislative Aide to U.S. Representative Cliff Stearns (R-FL) and Emily Shetty, Legislative Aide to U.S. Representative Ed Towns (D-NY). Reps. Stearns and Towns are the primary sponsors of the FAST Act.
In their update to NORD members, Power and Shetty said that the FAST Act:
is intended to modernize, expand, and codify the existing Accelerated Approval pathway at FDA
is now being considered for inclusion in the reauthorization of the user fee program at FDA, which is broadly considered a priority for passage during this legislative session
and is the current version of legislation introduced earlier known as "ULTRA", with language refinement to ensure that FDA's standards requiring demonstration of safety and efficacy remain strong.