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21st Century Cures

This is an initiative within the U.S. Congress seeking to understand how to advance innovative medical research and to accelerate the development of safe, effective medical treatments and cures, particularly for patients with unmet medical needs.

Since most people who have rare diseases do not have FDA-approved treatments specifically for their diseases, NORD has been very actively involved in this initiative and has provided both in-person testimony and written comments in support of the work of this initiative.

Recent News

On April 30, 2015, NORD staff attended the 21st Century Cures Hearing and it included many highlights for NORD and the rare disease community.  Read NORD's summary here.

Invited Testimony

On two occasions to date, NORD representatives have presented in-person, invited testimony at hearings being conducted in conjunction with the 21st Century Cures initiative.

On May 20, 2014, NORD Board Member Frank Sasinowski presented invited testimony at a hearing focusing on a report released by the President’s Advisory Council on Science and Technology.  Read the text of his remarks.

On July 11, 2014, NORD Board Member and Scientific/Medical Adviser Marshall Summar, MD, presented invited testimony at a hearing focusing on the importance of the patient perspective in drug discovery and development.  Read NORD blog on his testimony.

Read full text of testimony by Dr. Summar on behalf of NORD.

Additional Written Submissions by NORD

NORD has responded to each request by the Energy & Commerce Committee for input on specific topics in the 21st Century Cures initiative.

On February 3, 2015, NORD and 28 other organizations submitted a letter to Chairman Upton to urge Congress to include the Patients' Access to Treatment Act, PATA, in the final 21st Century Cures legislation.

On July 25, 2014, NORD submitted comments to supplement the record for the hearing entitled “21st Century Cures: Examining Barriers to Ongoing Evidence Development and Communication.” Read NORD’s comments.

On July 21, 2014, NORD submitted comments in response to the 21st Century Cures Initiative’s fourth white paper titled “Leveraging Technology to Advance the Discovery, Development and Delivery of Better Treatments and Cures.” Read NORD’s comments.

On June 13, 2014, NORD submitted written comments in response to a white paper from the 21st Century Cures initiative seeking input from the patient community. Read NORD’s comments.

On May 30, 2014, NORD submitted written comments in response to an initial “Call to Action” issued by the House Energy & Commerce Committee on behalf of the 21st Century Cures initiative.  Read NORD’s comments.

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