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Capitol Hill Updates

Rare Disease Week on Capitol Hill is right around the corner! We are thrilled that we will be joined by more than 600 rare disease advocates representing 48 states! Our Legislative Conference is now at capacity, but we will be offering a live-stream option (link below) for those unable to join us in-person. Advocates who are registered to attend can find tips on how to prepare for a successful week here

Meanwhile, debates around the future of healthcare reform continue to heat-up in DC and across the nation as lawmakers have returned to their districts to hold town hall meetings to hear from constituents. Republicans have begun evaluating options for pathways to repeal and replace the Affordable Care Act, but at the time of this writing, no consensus has emerged. In a campaign-style speech delivered in Florida on February 18th, President Trump has committed to releasing a plan in "a couple of weeks." The renewed engagement around healthcare reform has put many critical issues on the backburner for the time being, so many expect that reauthorization of the Prescription Drug User Fee Act (PDUFA) , which helps ensure funding for human drug review at the Food and Drug Administration (FDA), may be slowed. 

Community Action Alerts & Policy Resources

The National Organization for Rare Disorders (NORD) is seeking patient stories to educate lawmakers on the importance of healthcare coverage for rare disease patients. To submit a story on high risk pools, annual and lifetime limits, or loss of coverage, visit this website to share you experience and to learn more about the issues. 

The Public Policy Working Group, part of the EveryLife Foundation's Community Congress program, is circulating a sign-on letter to the Trump Administration to express concern over the hiring freeze and the impact it could have on biomedical innovation and research. More than 170 patient organizations have signed-on to the letter. Click here to view the letter, the signing organizations, and to add your organization's name.

Today is the signing deadline! Kids V Cancer is calling on organizations to endorse the RACE for Children Act, legislation to direct companies to study cancer drugs in pediatric populations. To endorse the bill click here, or to join the RACE for Children advocacy coalition, click here. To learn more about the legislation, click here

Research!America is calling on advocates to support funding for vital health agenciessuch as the National Institutes of Health (NIH) and FDA. Take a moment to email your representatives in Congress to ask that they support increasing funding for health research

The National MPS Society is asking for advocates in Missouri to take action to advance state newborn screening legislation for MPS II and SMA. Click here to view the action alert and learn more about the legislation.

The EveryLife Foundation for Rare Diseases is seeking patient organizations to sign-on in support of the OPEN ACT as Congress prepares to reintroduce the legislation. To date, more than 170 patient organizations have endorsed the legislation. Click here to view the list of supportive organizations. To add your organization to the list, please email your name, title, organization, city and state to mbronstein@everylifefoundation.org. 

Community Events
On Monday, February 27th from 12-1pm, Sarcoidosis of Long Island and the Foundation for Sarcoidosis will host a Congressional lunch briefing on the Sarcoidosis Awareness Month Resolution and Its Impact. For more information and to register,
click here. 

On Tuesday, February 28th, RDLA will hold a Legislative Conference to prepare patient advocates for meetings on Capitol Hill. Experts Capitol Hill and the advocacy community will discuss what to expect from the new Congress and Trump Administration, how to build an effective relationship with Members of Congress and staff, and key legislation for the rare disease community. You can view the agenda and register for the free livestream here.

On Thursday, March 2nd, the Rare Disease Congressional Caucus will hold a briefing entitled, "Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform". To view the agenda and to register, click here. 

On Wednesday, March 15th, at 2pm ET, RDLA will hold its next monthly webinar to discuss pressing state and federal policy and advocacy issues. To register for the meeting, click here

RDLA Updates & Reminders

Rare Disease Legislative Advocates (RDLA) a program of the EveryLife Foundation, serves as a legislative advocacy center and clearinghouse with many free resources for individual advocates and rare disease advocacy organizations.

On the RDLA website, you can find:

Close to 100 advocates joined the most recent RDLA webinar for updates on legislation at the state and federal levels. We welcome additions to the event calendar, agenda items for the monthly legislative webinars, and new legislative resources such as white papers for the monthly newsletter as well action alerts from any patient advocacy organizations. If you are interested in learning more about how we can help amplify your advocacy efforts, please contact Vignesh Ganapathy at VGanapathy@everylifefoundation.org.

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Sign-up for our email list to make sure you don’t miss monthly newsletters and action alerts! ***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. Click here to unsubscribe