Legislative News

UPDATE: 21st Century Cures Act Passes the House!
Earlier this month, the House passed the historic 21st Century Cures Act HR 6 by a wide bipartisan margin of 344-77! This is a huge victory for rare disease patients and the patient advocates who made this possible. Looking ahead, it's now up to the Senate to take action and pick up the pace on their initiative, called Innovation for Healthier Americans. Our work is far from over. In the coming months, we will be providing advocates with more avenues for action to make sure this bill passes the Senate and ultimately becomes law. 

New Report on Senate's Innovation for Healthier Americans Initiative
The Bipartisan Policy Center released a new report on Monday detailing several recommendations for the Senate's Innovation for Healthier Americans initiative. The report provides various tips for enhancing review at the FDA and enhancing patent protections for drugs addressing unmet needs. You may view the full report online. 

Action Alerts

Sign-On to Stop Sequestration
Across the board budget cuts, commonly known as sequestration, are a threat once again. A broad group of advocacy organizations have come together to fight these cuts, which could slash billions in funding for vital agencies like the NIH and FDA. Take action today and ask Congress to stop the threat of sequestration once and for all. You may read the letter here and sign-on your organization on using this link. Signing deadline is August 21st. 

Thank Congress for 21st Century Cures 
Now that the 21st Century Cures Act has successfully passed the House, we should take a moment to thank the lawmakers who helped make this possible. Send an email to your Representative to thank them for their support on the 21st Century Cures Act, a bill that could be a game-changer for the rare disease community. 

Provide Input on the NIH's Strategic Plan 
The NIH is in the process of updating its five-year strategic plan and has requested input from the community. This is an opportunity to provide input on various themes and areas NIH can focus on across the agency, including rare diseases. Click here to see the full request. Deadline is August 16. 


RDLA's West Coast Legislative Conference: California
On Friday, July 31st, join us in San Francisco, CA at UCSF for our West Coast Legislative Conference. Registration and lunch will begin at 11:30am. Keynote speakers include former San Francisco Mayor Willie Brown, Congressman Eric Swalwell (CA-15), and UCSF Provost Dr. Dan Lowenstein. We will also have two panels of experts discussing 21st Century Cures and providing advice on effective advocacy during the upcoming August Recess. This is a perfect opportunity for advocates to learn more about policy and to engage in practice meetings to help them prepare for In-District Lobby Days. Click here for more information and to register.

RDLA's In-District Lobby Days Webinar
On Wednesday, August 5th, RDLA is holding a webinar in preparation for our annual In-District Lobby Days event. This is a prime opportunity to meet with your representatives in your own backyard and talk about policy issues that are critical to the rare disease community. The webinar will help advocates get the tools they need to be most effective for in-district meetings. Click here for register for the In-District Lobby Day webinar

Rally for Medical Research
On September 16th and 17th, the annual Rally for Medical Research will be held in Washington, DC. Join advocacy groups from across the country to engage in Hill meetings urging Congress to boost our nation's investment in medical research. For more information and to sign-up, visit the Rally for Medical Research homepage

Childhood Cancer Summit
On Friday, September 18th, the Caucus on Childhood Cancer will convene their annual Summit in the Capitol Visitors Center at 9am. For more information, contact Andy Taylor in Rep. McCaul's office andy.taylor@mail.house.gov.

Now Seeking Nominations for RareVoice Awards Gala
On Wednesday, November 4th, RDLA will gather the rare disease community to recognize those who have made difference over the past year. We are seeking nominations for congressional staff, patient advocates and/or organizations, as well as government agency leaders for the prestigious awards. The deadline for nominations is Friday, July 31st. For more information and full nomination details, visit this web page

 ***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 mbronstein@everylifefoundation.org