The EveryLife Foundation for Rare Diseases submitted comments on Cures 2.0 (H.R. 6000), legislation introduced by Representatives DeGette and Upton in November that builds on their landmark 21st Century Cures Act.
In the comments, EveryLife expressed support for the legislation that includes multiple provisions speaking to the needs and challenges of the rare disease community. Representatives DeGette and Upton were urged to retain important provisions such as the establishment of additional inter-center institutes at the FDA, including one focused on rare diseases, provisions that expand access to genetic testing, enhance the use of real-world evidence and further efforts to advance patient focused drug development among others. EveryLife also offered some additional recommendations for further refinement, including additional regulatory reforms drawn from the STAT Act (HR1730/S670) to speed the development of and access to rare disease therapies and priorities for the establishment of the Advanced Research Project Agency for Health (ARPA-H) which is currently authorized in the Cures 2.0 legislation.
We look forward to working with Representatives DeGette and Upton as they advance these important research, regulatory and access policies in 2022 and applaud their ongoing leadership and commitment to the rare disease community.
Read the comments here. View past articles about Cures 2.0 here.
