Resources
The Save Rare Treatments Task Force represents a diverse set of organizations who worked together to encourage Congress to pass the ORPHAN Cures Act. The Task Force continues to collaborate on and support policies which will lead to more treatment options for the rare disease community. See our evolving list of relevant research, insights, and updates related to the ORPHAN Cures Act and other policy priorities.
The ORPHAN Cures Act
Support Letters and Statements
- Task Force Celebrates ORPHAN Cures Becoming Law
- Arya Singh – Don’t Let Rare Disease Patients be Left Behind with Research Cuts
- Task Force Statement of Support for Senate Introduction of ORPHAN Cures
- Task Force Statement of Support for ORPHAN Cures in Reconciliation
- Save Rare Treatments Task Force ORPHAN Cures Act Support Letter
- The New England Council: Support of S. 3131 and H.R. 5539
- Rare Disease Company Coalition: RE: RDCC Supports S.3131/H.R. 5539, the ORPHAN Cures Act
- Save Rare Treatments Task Force: Statement for the Record, Senate Finance Committee, Full Committee Hearing “Lower Health Care Costs for Americans: Understanding the Benefits of the Inflation Reduction Act”
In the News
White Papers and Research
- Incubate : Life Sciences Rare Disease Tracker – Tracking Rare Disease Drug Development Challenges Amid a Shifting Policy Environment
- National Pharmaceutical Council: Early Signals of the IRA on Orphan Drugs
- Save Rare Treatments Task Force: Landscape Analysis on Declining Investment in Rare Disease
- University of Chicago: The Potentially Larger Than Predicted Impact of the IRA on Small Molecule R&D and Patient Health
- Biotechnology Industry Organization: Understanding the IRA’s real-world impacts starts with understanding the innovation ecosystem