Today, February 29, 2016, is not only a special day because it's leap day, but also because it is Rare Disease Day . Taking place on the last day of February every year, Rare Disease Day is a chance for the rare disease community to come together and raise awareness to the public and to policymakers about rare diseases and their effects on people’s lives around the world. This campaign brings together over 80 countries worldwide in the effort to find cures and advocate for more research and development, and is sponsored by the National Organization for Rare Disorders (NORD) , as well as the European Organization for Rare Disorders (EURODIS). This year's theme is “Patient Voice,” identifying...
Dear Research Advocate: Despite their fierce partisan standoff regarding confirmation of a Supreme Court nominee, members of the Senate acted in a strongly bi partisan manner yesterday to confirm Robert M. Califf, M.D., as the new FDA Commissioner. Dr. Califf brings an accomplished career of expertise and insight to the position. The goals he has set include increasing patient involvement in the FDA regulatory process, streamlining clinical trials, and attracting and retaining the best scientists, according to STAT News . For more on Dr. Califf’s confirmation, please see my statement . Commissioner Califf will be joining us as a keynote speaker at Research!America’s Annual Meeting at noon...
The Global Liver Institute is proud to be a member of Research!America as we elevate the nation’s and the global understanding of the need for a more collaborative, coordinated and efficiently-resourced approach to preventing and eliminating liver diseases. Liver diseases currently affect more than half a billion people around the world, primarily forms of viral hepatitis, and cause more deaths annually than HIV, TB, and malaria combined. Despite lack of attention, stigma, persistent myths about the causes of liver disease, and over-representation by multiple vulnerable populations the field of liver disease can and should be highlighted as an innovation success story. Researchers have...
Dear Research Advocate: This week I had the pleasure of participating in a research “summit” hosted by Louisiana State University (LSU), Research!America, and our honorary host, Senator Bill Cassidy (R-LA). I moderated a powerhouse panel featuring NIH Director Francis Collins, M.D., NSF Director France Cordova, Ph.D., and FDA’s Center for Drug Evaluation and Research (CDER) Director Janet Woodcock, M.D., each of whom offered state-specific illustrations of the impact federally-funded Louisiana research has had to date, and signalled the many opportunities Louisiana has to do more. This standing-room-only, high-content gathering drew research, academic, business and philanthropic leaders...
Research conducted at Louisiana institutions benefits not only those in the state but also people across the country, said Senator Bill Cassidy (R-LA) during his opening remarks at the Louisiana Research Summit held on February 16 at the University Medical Center in New Orleans. The summit, co-hosted by Research!America, assembled federal, state, university, and business leaders to discuss current challenges and opportunities for advancing research in Louisiana. At several junctures during the summit, Senator Cassidy stressed the importance of making Louisiana "easy to work with" by lowering administrative barriers and building on success to date. He also emphasized that the summit was not...
Dear Research Advocate, The President released his FY17 budget on Tuesday, launching this year’s appropriations process. Unfortunately, his proposed budget falls short of expectations and far short of putting adequate resources to work to find solutions for what ails us. Cuts to the baseline budgets of NIH and CDC , and flat funding for FDA 's drug ($492 million) and biologics ($215 million) programs are proposed. While temporary, mandatory funding is provided for several important initiatives -- $755 million for the cancer moonshot initiative, $107 million for precision medicine, and $1.8 billion to address the Zika virus, this nation cannot sustain a robust research infrastructure with...
The February issue of The Research Advocate is now online . Highlights from this month include: Senator Roy Blunt (R-MO) and Representative Tom Cole (R-OK) will be honored with the Whitehead Award for Medical Research Advocacy at Research!America's 2016 Advocacy Awards Dinner for increasing investments in research and elevating the importance of medical progress among national priorities. Vice President Biden’s ‘moonshot’ initiative to defeat cancer has received support from many Americans who say they are willing to pay more in taxes to support cancer research, according to a new national public opinion survey commissioned by Research!America. A member spotlight featuring the American...
AMGDB Annual Meeting in Costa Rica: Jan 13-17th, 2016 We were delighted to have the honor of hosting Mary Woolley, president & CEO of Research!America, at the annual meeting of Biochemistry Department Chairs from North America. In attendance were chairs from 47 different departments of biochemistry from across the U.S., as well as three from Canada and one from Puerto Rico. A major theme of this year’s meeting was to identify potential strategies in response to the reduction in funding for biomedical research in the United States in recent years. Last year we had reports presented by the presidents of the American Association of Medical Colleges (AAMC) and Federation of American...
Dear Research Advocate: As task force meetings for Vice President Biden’s “moonshot” initiative began this week, a new public opinion survey commissioned by Research!America showed that 50% of Americans favor a tax increase to fund cancer research. While this manner of funding the moonshot is not currently on the table, the survey finding underscores the high priority Americans place on curing cancer. The President told Majority Leader McConnell and Speaker Ryan that assuring resources for research, cancer in particular, is one of his five priorities for working across the aisle this year. His FY17 budget proposal -- scheduled for release next Tuesday -- will reportedly request additional...

Sidebar Quote

Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor