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Final Push on 21st Century Cures Act

The push to advance the 21st Century Cures Act continues, with the Senate currently considering the legislation, which was passed in the House last summer. The Senate is deliberating over how to fund proposed spending increases in the bill, which would provide new and vital funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA). Senate Majority Leader Mitch McConnell (R-KY) has stated that if a compromise can be reached on how to fund the legislation, he would advance it to the Senate floor for a vote. The timing of this is still unclear as negotiations are ongoing, but time is running out on the legislative calendar. Meanwhile, on the House side, Energy and Commerce Committee Chairman Fred Upton (R-MI) and Representative Diana DeGette (D-CO) convened a meeting of leading advocacy organizations to encourage them to keep up pressure on the Senate to advance the legislation. They are calling for a concerted, national grassroots push after Memorial Day with the goal of passing the Cures legislation prior to July 15th, when Congress recesses for the summer. 

Community Action Alerts 

The Aidan Jack Seeger Foundation asks advocates to urge Congress to expand newborn screening for Adrenoleukodystrophy (ALD). Newborn screening currently varies widely by state, and the proposed legislation would require all states to implement a screening program. Click here to view the action alert and contact your representatives. 

The EveryLife Foundation for Rare Diseases asks advocates to urge Congress to support the OPEN ACT (Orphan Product Extensions Now Accelerating Cures & Treatments), legislation to encourage companies to repurpose drugs for rare diseases. The legislation has garnered several new co-sponsors, but additional support is needed to help ensure the passage of this vital legislation, which could double the number of treatments available to rare disease patients. Click here to view the alert and to take action.

Research!America asks advocates to contact their Senators to ask that they advance the 21st Century Cures Act. Click here to view the alert and take action. Please take a moment to customize your message for maximum impact. 

The Community Oncology Alliance asks advocates to call Congress to urge them to halt proposed cuts to Medicare Part B. There is growing concern that these proposed changes could affect patient access to rare disease therapies. For more information on the proposal and to take action, click here. 

Rare Disease Legislative Advocates (RDLA) is looking to bolster the roster of the Congressional Rare Disease Caucus, a bicameral group of Senators and Representatives who help give the rare disease community a voice on Capitol Hill. Use this link to email your Representatives and Senators to ask them to join the Caucus.

Community Events

On June 7th, the University of North Carolina (UNC) is holding an event in Raleigh to thank North Carolina legislators for their work on behalf of rare disease patients and to raise awareness about the challenges of rare diseases. To register and to learn more, click here.

On June 22nd at 1:00 pm ET/10:00 am PT, Rare Disease Legislative Advocates (RDLA) will host our next monthly webinar. For suggested policy topics and/or speakers send an email to vganapathy@everylifefoundation.org. Click here to register for the webinar.  

On June 28th and June 30th, join RDLA for regional Legislative Conferences in Boston on June 28th and both Seattle and Chicago on June 30th. Each conference will feature key political leaders and help train advocates on effective rare disease advocacy. For more information and to register, click here.

From July 18th through September 5th, RDLA will host In-District Lobby Days for advocates across the country.  Register now, and RDLA will schedule meetings for you with your Representative and Senators in their district offices at times that are convenient for you. To register, please click here.

On September 22nd, the annual Rally for Medical Research will convene advocates from across the country to educate Congress on the importance of  additional funding for NIH. Click here for more information about the Lobby Day and other activities during the week of the Rally. 

On November 16th, RDLA's RareVoice Awards will be held in Washington, D.C. at the Arena Stage. Nominations are open through July 31st! Please nominate outstanding rare disease advocates for their efforts at the state and federal levels as well as Congressional and federal agency staff. Click here for more information about the event and to nominate advocates for an award.

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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.

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