The EveryLife Foundation will provide travel stipends ranging from $400 to $1000 to enable advocates from across the country to participate in Rare Disease Week on Capitol Hill, to be held from February 25th through March 1st, 2018. The deadline to apply is December 10th.
About Stephanie Fischer
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Meanwhile lets just say that we are proud Stephanie Fischer contributed a whooping 17 entries.
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!
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.
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.
The RareVoice Awards is an annual celebration to honor advocates who give rare disease patients a voice on Capitol Hill. We encourage the community to nominate individuals and organizations who advocate for legislation and policy that benefits the rare disease community.
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.