NORD Converges on Capitol Hill for Rally for Medical Research Hill Day to Advocate for Increased Funding for the National Institutes of Health (NIH)

More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH

Washington, D.C., September 22, 2016— The National Organization for Rare Disorders (NORD) is one of more than 300 organizations participating in the Rally for Medical Research Hill Day on September 22, uniting millions of Americans across the country to call on our nation’s policymakers to make life-saving medical research funding a national priority.

“On behalf of the 30 million Americans with rare diseases, NORD is honored to participate in Rally for Medical Research Hill Day to advocate for increased funding for the NIH,” said Paul Melmeyer, Associate Director of Public Policy at NORD.  “There are 7,000 rare diseases, 95 percent of which still have no treatment.  We are here to remind Congress that families with rare diseases are suffering and we need their support to fund critical medical research.”

Congress must build on the momentum that began in fiscal year (FY) 2016 when it provided the NIH with a $2 billion increase by providing another $2 billion increase for the NIH in FY 2017.  The Senate has taken important steps to do this, as Senator Roy Blunt (R-Missouri) and Senator Patty Murray (D-Washington) proposed a $2 billion increase for the NIH in their FY 2017 appropriations bill.

The Senate Appropriations Committee approved this increase, and now we ask Congress to ensure this robust, sustained and predictable funding by passing an FY 2017 omnibus spending bill that includes a $2 billion funding increase for the NIH before the end of the year.

Participants also will thank Congress for reversing a decade of budget cuts (when inflation is taken into account) by providing the NIH with a $2 billion funding increase for the current fiscal year (FY 2016).

The Rally for Medical Research initiative was launched in April 2013 to bring together the entire medical research community to ask Congress to make the NIH a national priority. Through the annual Hill Day, the Rally for Medical Research continues to raise awareness about the critical need for an increased investment in the NIH to improve health, spur progress, inspire hope, and save more lives.

For more than a decade, the NIH budget failed to keep up with the rate of biomedical inflation.  As a result, fewer competitive research grants were awarded, slowing the pace of progress against all diseases that affect millions of Americans and their loved ones. Congress took an important step last year when it provided the NIH with an additional $2 billion in funding, the first significant increase in years.

“Studying rare diseases can often lead to findings about more common conditions,” Melmeyer added.

This investment is enabling researchers at universities and research institutions in all 50 states to pursue emerging scientific opportunities to address the nation’s most pressing health needs. In addition to bringing hope and improving the quality of life for patients, the ongoing success of the medical research enterprise also drives local and national economic activity, strengthens U.S. competitiveness in an increasingly innovation-based global marketplace, and inspires future generations of scientists to commit to careers in research.

The National Organization for Rare Disorders (NORD) is a 501(c)(3) independent charity and the leading independent advocacy organization representing all patients and families affected by rare diseases.