The National Health Council is circulating a sign-on letter to Congressional leadership to urge passage of the 21st Century Cures Act by the end of 2016. As we near the end of the year, it is imperative that the tireless work by Congress and the patient community does not go to waste by delaying action until the next Congress in 2017.
About Grant Kerber
This author has yet to write their bio.Meanwhile lets just say that we are proud Grant Kerber contributed a whooping 41 entries.
Entries by Grant Kerber
Rep. Gene Green, the top Democrat on the House Energy and Commerce health subcommittee, told The Hill that a new version of the 21st Century Cures bill will allocate about $4 billion over five years for research at the National Institutes of Health (NIH), down from the original $8.75 billion.
Please mark your calendar and plan to join us for Rare Disease Week on Capitol Hill, to be held February 27 through March 2, 2017 in Washington, DC. The week of events brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
One day before the program’s sunset, President Obama signed a bill to temporarily reauthorize the rare pediatric disease priority review voucher program for 3 months. The program has had significant interest from industry, and the program’s extension on September 30 was the product of substantial efforts on the part of stakeholders, including rare disease advocates.
On September 14, 2016, the Rare Disease Congressional Caucus gathered a contingent of thought-leaders in the rare disease space to discuss Strengthening Medical Innovation in America for Rare Disease Patients.
With debate around the costs of prescription drugs swirling, a new report was issued from IMS Health detailing future spending on orphan drugs. The authors found that despite growth in the number of available treatments, overall oprhan drug spending will continue to be sustainable in the future.
As a FREE service to the rare disease community, Rare Disease Legislative Advocates (RDLA) will set-up a meeting for you and fellow advocates at your convenience. Any rare disease advocate is encouraged to join us for In-District Lobby Days, held from July 18th to September 5th. Registration is free and available online through Friday, July 15th. You can specify when you are available during the summer recess and how far you are willing to travel for a meeting.
Do you know anyone who has gone above and beyond to become a rare disease policy leader or advocate in a state or in our nation? Rare Disease Legislative Advocates (RDLA) is seeking nominations for the RareVoice Awards to be given on November 16th in Washington, DC.
House Energy and Commerce Committee Chairman Fred Upton (R-MI), Ranking Member Frank Pallone, Jr. (D-NJ), and Rep. Diana DeGette (D-CO) issued the following statement following a meeting at the White House with Vice President Joe Biden on H.R. 6, the 21st Century Cures Act. Senate HELP Committee Chairman Lamar Alexander (R-TN) and Ranking Member Patty Murray (D-WA) also attended this afternoon’s meeting.
The EveryLife Foundation is working to expand the lifesaving potential of newborn screening in California. Last month, SB 1095 was introduced by pediatrician and California State Senator Dr. Richard Pan. This bill would help eliminate the legislative delay in newborn screening and ultimately ensure that patients are treated as early as possible. Early screening plays a […]