After the narrow defeat of Affordable Care Act replacement plans in the Senate, Senators have left for August recess without voting on other proposals. Sen. Alexander (R-TN), HELP Committee Chairman, along with Sen. Murray (D-WA), Ranking Minority, must bridge the chasm between viewpoints on opposite ends of the spectrum.
Sabah Bhatnagar recently joined the EveryLife Foundation team as Program Director of RDLA. She is a rare disease patient and is based in Washington, D.C.
While the President makes a recommendation, it is up to Congress to pass funding bills. It is important for rare disease advocates to contact their legislators to request funding for the federal programs they support.
The EveryLife Foundation and Global Genes are joining together to host a series of free RARE on the Road events this summer to help rare disease patients, caregivers and other advocates to learn, grow and become independent activists for their rare disease community.
Facebook and Twitter provide opportunities to engage state and federal policymakers as well as other rare disease advocates who can take action on their own and/or increase the reach of your message.
Data in a new report illustrates that NIH research creates jobs across the country and helps make the case that funding should be increased, not decreased. According to United for Medical Research (UMR), research funded by NIH supported close to 380k jobs and $64.799 billion in economic activity in FY2016.
The Rare Disease Congressional Caucus hosted a briefing during Rare Disease Week on Capitol Hill which focused on Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform.
FasterCures, a non-profit think tank with the goal of speeding and improving the medical research system, recently debuted a new resource to track implementation of the 21st Century Cures Act.
PDUFA enables FDA to collect user fees from biopharmaceutical companies in order to enable the Agency to review the safety and efficacy of new medicines more quickly. It is important for PDUFA to be reauthorized by the end of July or FDA will not be able to accept the user fees and would need to send furlough notices to staff.
More than 600 rare disease patients, caregivers, researchers and other advocates joined us during Rare Disease Week on Capitol Hill in Washington, DC from Monday, February 27th, through Thursday, March 2nd.