Breaking News from Capitol Hill
National #Cures2015 Day of Action Shakes up the Senate
A sincere thank you to the advocates who joined the #Cures2015 Day of Action last Friday and called their Senators to remind them that patients can't wait. In partnership with Global Genes, the EveryLife Foundation for Rare Diseases and dozens of patient organizations around the nation lit up Senate phone lines and took to social media to request that the Senate make Innovation for Healthier Americans a priority.
In other legislative news, the Speaker of the House, Rep. John Boehner (R-OH) has annouced that he will retire from Congress. The race to elect the next Speaker is already underway. Meanwhile, the House and Senate appear to have reached a short term agreement to keep the government funded, narrowly averting a shutdown.
This past summer, RDLA organized in-district meetings for rare disease advocates to meet with their legislators. In those meetings, advocates lobbied for a critical rare disease bill entitled, the Ensuring Access to Clinical Trials Act. We've just learned the House has joined the Senate in passing this bill, paving the way for it to become law! This is a huge victory for the rare disease advocacy community and will go a long way in helping rare disease patients access clinical trials.
Ask the Senate to Make Patients a Priority
Our work in the Senate is not done! Keep the pressure on the Senate to ensure they make patients a priority by emailing your Senators TODAY.
Rally to Raise the Caps!
On Wednesday, October 7th, the Coalition for Health Funding will hold a rally on the East Front of the U.S. Capitol (House side between Capitol and Library of Congress). The rally will draw attention to the arbitrary spending caps that have limited funding increases for vital health agencies like the NIH and FDA. You can RSVP here and find more information about the spending caps here.
Senate Briefing: Innovation for Healthier Americans
On Thursday, October 8th, RDLA will host a Senate lunch briefing entitled: "Innovation for Healthier Americans: Priorities for the Rare Disease Community." The briefing will be held in room 106 of the Dirksen Senate Office Building from 12-1pm. Participating organizations will discuss the priorities and provisions they wish to see included in the Senate companion to the 21st Century Cures Act, which was passed by an overwhelming bipartisan vote in the House in July. Click here to register and click here to view the full agenda. ***Action Alert: Ask your Senators to send staff to the briefing.***
On Wednesday, Ocotber 14th, RDLA will hold its next web meeting at 2pm Eastern time. The agenda will include reviews of several new pieces of legislation affecting rare disease patients. Click here to register.
RareVoice Awards Are Right Around the Corner!
On Wednesday, November 4th, RDLA will hold the RareVoice Awards at the Arena Stage in Washington, D.C. Join us to honor Members of Congress, Congressional staff, patient advocates, and the government officials who have been champions for the rare disease community. Registration is free and you may RSVP here.
Rare Disease Caucus Briefing: Precision Medicine
On Thursday, November 5th, the Congressional Rare Disease Caucus will convene a briefing on Precision Medicine from 12-1pm in room B318 of the Rayburn House Office Building. Confirmed speakers include representatives from 23&Me, John Crowley from Amicus Therapeutics, and rare disease advocate Matthew Might. Stay tuned for a formal invitation.
NPAF Meeting - Patient Perspective on Benefits & Costs
On Wednesday, November 18th, the National Patient Advocate Foundation will hold a policy consortuim in Washington D.C. on "Defining Value - the Patient Perspective on Benefits & Costs." To register or for more information, contact Aurelia Williams firstname.lastname@example.org.
Save the Date for Rare Disease Week 2016 - Travel Scholarships Available!
Rare Disease Week will be held Februrary 29-March 3rd, 2016 in Washington D.C. As in previous years, we are offering travel scholarships. APPLY TODAY. Be sure to mark your calendars - we're looking forward to seeing you all in DC next year!
Join Us on Social Media
Stay up to date on breaking rare disease legislative news by following @RareAdvocates on Twitter and Facebook.
***This E-Blast shares action alerts, legislative, and policy news and events from the patient advocacy community. RDLA does not take positions on the issues herein, but serves as a supportive clearinghouse for the rare disease community. Send us an email if you'd like your alerts and/or events included! Email email@example.com