In this series, we will be introducing you to rare disease advocates who made an impact at the state and federal level. These passionate teens are all nominated for RareVoice awards in the “Federal or State Advocacy by a Teenager” category.
Please join the more than 230 advocates who are meeting with their federal legislators during August recess by contacting your Members of Congress. It is easy to participate remotely, and you can do it on your own timeframe!
The Senate has passed the Food and Drug Administration Reauthorization Act (FDARA), a legislative package that supplements FDA funding by requiring manufactures to pay user fees when submitting medical products for review in exchange for a timely approval process.
Join more than 300 hundred patient and physician advocacy organizations, universities, research centers and biopharmaceutical industry associations at the Rally for Medical Research on September 14th in Washington, DC to support sustained investment in the NIH.
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.