Breaking Legislative News

House & Senate Join Forces to Create Bicameral Rare Disease Congressional Caucus
We in the rare disease community have much to celebrate as we approach the end of the year. Last week, the EveryLife Foundation for Rare Diseases announced the formation of the bicameral Rare Disease Congressional Caucus. The Caucus was recently expanded and now includes both the House and the Senate, thanks to Senators Hatch (R-UT) and Klobuchar (D-MN) who stepped-up as co-chairs. They join Representatives Lance (R-NJ) and Crowley (D-NY) who co-chair the House side of the Caucus, which boasts 88 bipartisan members. Read more about the new Caucus and please spread the word!

Congress Passes Budget Agreement, Big Boosts for NIH & FDA
On Friday, President Obama signed into law a year-end spending bill that funds the government through fiscal year 2016. The National Institutes of Health (NIH) was a huge winner, receiving a boost of $2 billion and the Food and Drug Administration (FDA) was provided an increase of $133 million! The Orphan Product Development Grants Program at FDA will also receive a boost of $2.5 million in 2016. This is a significant achievement for the rare disease advocacy community, which has been fighting for increased funding for both agencies. 

Priority Review Voucher Program is Extended, For Now
The Priority Review Voucher program, which helps incentivize rare disease drug development and was set to expire in March 2016, was extended until September 2016 under the new spending bill. Advocates are working to make the program permanent.   

Path for New FDA Commissioner Beginning to Clear
Dr. Robert Califf, the nominee for Commissioner of FDA, is still waiting for the Senate to approve his nomination. Senator Murkowski (R-AK) expressed concern about Dr. Califf, but the Health, Education, Labor and Pensions (HELP) Committee has announced that a vote to advance his nomination will be held in early January.




Action Alerts & Policy Resources

EveryLife Foundation for Rare Diseases: Urge the Senate to Prioritize Innovation for Healthier Americans
In July, the House passed the historic 21st Century Cures Act, legislation that could be a game-changer for rare disease patients. But the companion initiative in the Senate, Innovation for Healthier Americans, remains stalled. Click here to contact your Senators and urge them to prioritize Innovation for Healthier Americans. ***Social Media Campaign*** The EveryLife Foundation has launched a social media campaign with photos of patients asking the Senate to help give them cures this holiday season. Check out the Foundation's action alert page for examples. 

Sign-On to Support Modernizing Step Therapy
The Lupus and Allied Diseases Association, Inc. are circulating a sign-on letter to urge the modernization of step therapy protocols. Click here for additional background on how step therapies impact rare disease patients and to add your organization's name to the letter. 

Sign-On to Preserve GINA Protections
Genetic Alliance is circulating a sign-on letter about the Genetic Information Nondiscrimination Act (GINA). The Equal Employment Opportunity Commision has released a proposed rule on GINA that could severly undermine the protections of the law. Genetic Alliance is seeking organization's to sign-on and offer comments. Click here for more information and to sign the letter and click here to submit comments



RDLA Events

Rare Disease Week on Capitol Hill: Webinar
On Wednesday, January 20th at 
2:00pm ET, join us for an informational webinar on Rare Disease Week on Capitol Hill. We'll be covering information about the events and logistics. Click here to register. 

Rare Disease Week on Capitol Hill: February 29 – March 3, 2016
Mark your calendars and join us in Washington, D.C. in 2016 for Rare Disease Week on Capitol Hill. The week will kick off with Rare Disease Day at NIH on February 29, 2016 followed by several days of events that aim to educate, motivate, and bring the voice of rare disease advocates to the halls of Congress. The EveryLife Foundation is accepting applications for travel scholarships up to $1,000 through December 31st. For a complete schedule of Rare Disease Week on Capitol Hill events, visit the event page. Book your hotel now to get the special group rate


Save the Date: Next RDLA Meeting: Thursday, January 21st
Our next monthly RDLA webinar meeting will be held at 1pm Eastern time on Thursday, January 21st. Click here to register. Suggested agenda items are welcome and may be emailed to mbronstein@everylifefoundation.org. 




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 ***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.