Please pull out your calendars and save the date for RDLA’s Rare Disease Week on Capitol Hill 2016! Read more
ASK your Senators to make Innovation for Healthier Americans a priority.
A Delay in Legislation is a Delay in Treatments! Patients can’t wait.
Call Friday, Sept. 25th bit.ly/CuresNOW
On September 25th, the EveryLife Foundation and Global Genes have planned a national drive to ensure the Senate takes up the recently passed 21st Century Cures legislation from the House.
Motivated by the rallying cry that “Patients Can’t Wait”, both organizations plan to use the Global Genes Patient Advocacy Summit to pump up support and ensure that the Senate moves forward with this important legislation as soon as possible.
In-District Lobby Days has concluded! Rare disease advocates across the country streamed into the offices of their legislators, asking their Congressmen and Congresswomen to support pieces of legislation aimed at helping patients with rare diseases. Legislators have signed on to co-sponsor legislation, joined the Rare Disease Congressional Caucus, and agreed to support the Innovation for Healthier Americans when it is introduced in the Senate.
In-District Lobby Days is aimed at building relationships between the rare disease community and members of congress, while helping garner support for some pieces of legislation key to the community. Stay tuned with RDLA for more opportunities to advocate for the rare disease community.
RDLA applauds the House for approving the 21st Century Cures Act by a strong, bipartisan vote of 344 to 77. This landmark legislation will spur scientific discovery and bio-medical innovation, providing hope for patients and their families, while also protecting jobs and America’s leadership role in healthcare innovation.
Attention now turns to the Senate, and we look forward to working with Senators on their ideas and priorities for creating treatments and cures for rare diseases. We encourage the Senate to move quickly in advancing this legislation through the chamber and to the president’s desk.
If you’d like to know more about the contents of the 21st Century Cures Act, click here for our information page on the legislation.
We are less than 24 hours away from the historic House vote on the 21st Century Cures Act.
Unfortunately, several Members of Congress have introduced an amendment that would strip away billions in needed funding for NIH & FDA, which would undue much of what we have fought for. We cannot allow this amendment to stand! I know many of you called on Tuesday and your calls are making a difference and getting through. We’re asking you to call again to ensure that Congress gets the message.
As always, THANK YOU for your support and for keeping up the fight! And don’t forget to share this with your networks. We’re close to the finish line!
This week the House will hold a floor vote that will determine the fate of the 21st Century Cures Act HR 6. This historic legislation holds the potential to dramatically advance rare disease research and includes the OPEN ACT, legislation that could double the number of rare disease treatments. But we need your help to ensure the bill passes the House.
Your call and your voice could help make the difference. Please take a few moments to call and take a stand for rare disease patients everywhere.
THANK YOU for your support and for keeping up the fight on behalf of the rare disease community. Please remember to share this alert with your networks and on social media. We need all hands on deck!
We need your help to pass a historic piece of legislation called the 21st Century Cures Act (HR 6). The bill contains billions in new funding for the Food & Drug Administration, The National Institutes of Health, and a provision that could double the number of treatments available to rare disease patients (The OPEN ACT).
The bill will be coming up for a vote next week and we’ve received reports that Congressman Price in Georgia is not supportive of the legislation. We urgently need you to send a short email to Kyle Zebley in Rep. Price’s office to tell him how important this bill is to you and your family and for all rare disease patients. Below, I’ve included a sample message, that can be sent to Rep. Price’s Legislative Director, Kyle Zebley, at firstname.lastname@example.org
attend our webinars on July 8th & Aug 5th (you will receive call-in information in the confirmation email)