On January 23rd, President Trump instituted an immediate hiring freeze that would affect many federal agencies including the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Unfortunately, this freeze could significantly hamper research into rare disease treatments as well as the review and approval of new medicines. The EveryLife Foundation for […]
Kids v Cancer has put together a yearbook summarizing the achievements of pediatric cancer advocacy organizations in 2016 and outlining steps that pediatric cancer organizations plan to take in 2017.
If you are not able to join us and advocates from across the country at Rare Disease Week on Capitol Hill on February 27th through March 2nd, you can still make your voice heard on Capitol Hill and participate in some of the programming.
The webinar will feature Michael Werner, Executive Director for ARM, as well as a representative from the U.S. Food and Drug Administration’s (FDA) Center for Biologics Evaluation and Research. Questions will be welcome.
As we noted in a news brief last month, the law firm of Hyman, Phelps & McNamara P.C. has featured several blogposts on different provisions of 21st Century Cures Act. They will host two free webinars this month to further examine the Act, which will be good opportunities for advocates to learn more and ask […]
Join fellow rare disease patients, caregivers and other advocates from across the country at Rare Disease Week on Capitol Hill from February 27th through March 2nd, 2017. This is an opportunity for YOU to help educate the new Congress and shape healthcare policy to better meet the needs of the rare disease community. All of […]
We previously highlighted the provisions in the 21st Century Cures Act of greatest interest to the rare disease community, but there were many more in the 312 page legislation.
The final Rare Disease Congressional Caucus briefing of 2016 focused on the Prescription Drug User Fee Act (PDUFA), the agreement between the biopharmaceutical industry and Food and Drug Administration (FDA) regarding user fees paid by industry to supplement federal funding for human drug review.
Rare Disease Legislative Advocates recently hosted a webinar which provided an overview of Rare Disease Week on Capitol Hill, to be held February 27th through March 2nd, 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.
Thanks to a generous donation to our Rare Giving program, we are able to increase the amount offered to recipients! Advocates in Maryland and Virginia are eligible to receive $400 stipends, while advocates in other states in the continental U.S. are eligible to receive $800. Advocates in Alaska, Hawaii and Puerto Rico are eligible to receive $1,000 stipends.