Rare Disease Legislative Advocates compiled a congressional scorecard to educate advocates on how their Representative has voted on issues affecting the rare disease community. Each Representative’s score is based on membership in the Rare Disease Congressional Caucus as well as action …
From The EveryLife Foundation for Rare Diseases:
We are urging advocates to thank Congress for their hard work in assembling this historic legislative package.
This action alert will send an email to thank Congress for including rare disease priorities into the 21st Century Cures legislation.
After hundreds of Hill meetings, emails and calls to Congress, we are seeing the true impact of Rare Disease Patient Advocacy on the 21st Century Cures Legislation. The latest draft released this week includes many priorities for the rare disease community – including 3 out of the 4 pieces of legislation advocates lobbied for during Rare Disease Week 2015:
Other important provisions benefiting the rare disease community include, making the Pediatric Priority Review voucher program permanent, the NIH Innovation Fund, language on Precision Medicine for Orphan diseases, and patient focused drug development.
This Sign-On Letter from PhRMA comments on patent reform legislation being considered in both the House and the Senate, and asks that Congress maintain a strong and secure patent system that address abuses that have emerged at the PTO. With Congress moving quickly to advance comprehensive patent reform, the deadline to sign is Monday, May 18, 2015. If this is also a priority for your organization, please contact Lauren Neff to sign-on.
The 21st Century Cures Act will be considered in front of the full Energy and Commerce Committee:
Tuesday, May 19, 2015 – 5:00 pm and Wednesday, May 20, 2015 – 10:00 am
Todd Wilson from Inside Health Policy has a nice write-up on yesterday’s successful effort to include the OPEN ACT in 21st Century Cures. Thank you to everyone who took action!
Here is some of what Todd wrote:
House lawmakers, facing …
The Subcommittee on Health has scheduled a markup on Thursday, May 14, 2015, at 10:00 a.m. in room 2123 of the Rayburn House Office Building …