Sunday, March 25, 2012


For NORD Member Organizations

Join NORD in Supporting the FAST and TREAT Acts
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.
Next Steps:  Action is Needed on Two Fronts
NORD is encouraging all stakeholders in the rare disease community to show support on two fronts:
  • Educating members of the House of Representatives about the need to support the FAST Act to accelerate development of treatments
  • Educating members of the Senate about the need to support the TREAT Act for the same reason 
Please use the following links to read and share with others the full text of the FAST and TREAT Acts.
Questions or comments related to NORD's support for this proposed legislation may be directed to Diane Dorman, Vice President of Public Policy (ddorman@rarediseases.org).  Questions related to submitting letters through the Legislative Action Center may be directed to Jason Barron, Associate Director of Public Policy (jbarron@rarediseases.org).