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House of Representatives Approves 21st Century Cures Legislation

In March 2015, the Usher Syndrome Coalition signed on to support the 21st Century Cures Act (HR 6), along with the National Alliance for Rare Diseases (NORD) and hundreds of patient organizations.

As a member of the National Alliance for Eye and Vision Research (NAEVR), we applaud the unanimous approval of the bill by the House and Energy Commerce Committee and commend this bipartisan victory for medical research in Congress. This bill has the ability to impact the Usher syndrome community in a number of ways, including: 

Providing new incentives for the development of drugs for rare diseases. 

Small populations and a lengthy development process often make the discovery of treatments for rare diseases and conditions challenging. HR 6 creates new economic incentives for the development of therapies for serious and life threatening conditions, including rare diseases. New incentives will translate to more, faster cures. 

Modernizing clinical trials. 

Personalized medicine allows researchers to design more targeted clinical trials that can produce results faster and cheaper. HR 6 will allow greater use of patient generated registries that speed the recruitment of participants. It will also allow researchers to screen patients in advance to determine if their genetic predisposition makes them better candidates for targeted therapies. The legislation also clears the way to use new and creative adaptive trial designs and deploy the most modern statistical and data tools, while significantly reducing existing, duplicative or unnecessary paperwork requirements.

Read more from the House Energy & Commerce Committee - 21st Century Cures: What You Need to Know


(Washington, D.C.) Following up on its May 21 letter of support to the House Energy and Commerce (E&C) Committee’s leadership for H.R. 6, the 21st Century Cures Act, today the National Alliance for Eye and Vision Research (NAEVR) commended the House for its overwhelming passage of the bill. NAEVR Executive Director James Jorkasky issued the following statement:

“On behalf of the community of support for vision research, NAEVR thanks the 344 bipartisan Members supporting the bill−170 Republicans and 174 Democrats−for approving $8.75 billion over five years in mandatory funding for the National Institutes of Health (NIH) through the creation of a new Innovation Fund, and authorizing increased funding levels for the NIH by $1.5 billion per-year for the next three Fiscal Years. The Innovation Fund has as one of its priorities the support of early-stage investigators who represent the future of vision research.

In particular, NAEVR commends the steadfast leadership of E&C Committee Chairman Fred Upton (R-MI), Oversight and Investigations Subcommittee Ranking Member Diana DeGette (D-CO), Health Subcommittee Chairman Joe Pitts (R-PA), full committee Ranking Member Frank Pallone, Jr., (D-NJ), and Health Subcommittee Ranking Member Gene Green (D-TX) in developing and championing this bill through the legislative process.

NAEVR also thanks the vision researchers who sent email letters to their Members urging support for H.R. 6 and requesting that they oppose any efforts to change the mandatory nature of the funding for the new Innovation Fund.

NAEVR will work with its medical research colleagues to support a similar measure in the Senate, led by the Senate Health, Education, Labor, and Pensions (HELP) Committee.

To read more, click here.

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