Resources
The Save Rare Treatments Task Force represents a diverse set of organizations working together to pass the ORPHAN Cures Act. See our evolving list of relevant research, insights, and updates related to The ORPHAN Cures Act and rare diseases to help you stay informed on this important work.
Legislation
Support Letters
- 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”
- EveryLife: Comments on Medicare Drug Price Negotiation Program Initial Guidance
- National Health Council: Comments on Medicare Drug Price Negotiation Program Initial Guidance
- National Organization for Rare Disorders: Comments on Medicare Drug Price Negotiation Program Initial Guidance
- National Organization for Rare Diseases: Final Inflation Reduction Act Guidance Risks Stifling Innovation for Rare Disease Community
- National Organization for Rare Disorders: Letter to CMS from Rare Disease Patient Organizations – Medicare Drug Price Negotiation Program Guidance
In the News
White Papers
- 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
- Biotechnology Industry Organization: New BIO Poll Reveals Americans Strongly Support the Orphan Cures Act | BIO
- Biotechnology Industry Organization: The Outlook for Orphan Drugs
- Council for Affordable Health Coverage: How the Inflation Reduction Act is Impacting Rare Disease Patients
- Health Affairs: How The IRA Could Delay Pharmaceutical Launches, Reduce Indications, And Chill Evidence Generation
- Health Capital Group: Rare Disease Companies in the Public Markets: Challenging Performance Against a Backdrop of Policy Uncertainty
- Incubate: Life Sciences Investment Tracker
- Pharmaceutical Research and Manufacturers of America: Reduction Act stifles innovation for small molecule medicines
- Pharmaceutical Technology: Rare disease drug development needs regulatory incentives to grow in 2024
- Rare Access Action Project: Inflation Reduction Act to Harm Rare Disease Innovation
- Tax Foundation: Inflation Reduction Act’s Price Controls Are Deterring New Drug Development
- Tufts University: Follow-On Indications for Orphan Drugs Related to the Inflation Reduction Act
- University of Chicago: The Potentially Larger Than Predicted Impact of the IRA on Small Molecule R&D and Patient Health
- VitalTransformation: IRA’s Impact on the US Biopharma Ecosystem