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Capitol Hill Updates

While much of the national poltical debate has shifted toward gun control and the upcoming election, momentum continues to advance the 21st Century Cures legislation in the Senate. Two weeks ago, the EveryLife Foundation for Rare Diseases partnered with Research!America and dozens of patient organizations to launch a day of action, generating hundreds of calls and messages to Congress urging them to advance Cures before time runs out. Last week, Chairman Lamar Alexander (R-TN) published an op-ed in The Hill, outlining the need for the Cures legislation and calling for consensus for the benefit of all Americans. At the time of this writing, the timing of the legislation is still unclear and there has been some talk of including the Cures bills in a larger legislative package encompassing broader health issues like opioid legislation. 

Meanwhile, the appropriations committees are continuing their work, with the Senate recommending a boost of nearly $2 billion for the National Institutes of Health (NIH), although much of this proposed increase was made possible by cuts to other vital health programs. The House is now slated to discuss their version of the funding bill although historically, Congress has been unable to meet the September 30th deadline of reaching funding agreements. This could be especially difficult this year given the election and limited time on the legislative calendar.  

Community Policy Resources & Action Alert

The Muscular Dystrophy Association is circulating an organizational sign-on letter to make air travel more accessible for millions of Americans. To view the letter click here. To sign-on, please email Kristin Stephenson at kstephenson@mdusua.org. 

The Congressional Research Service has released an analysis comparing the 21st Century Cures Act, as passed by the House, with the provisions that have been passed by the Senate HELP committee to date. You can read the full report here

The National Cancer Advisory Board, which is convening the National Cancer Moonshot Initiative, seeks comment on opportunities to advance cancer research. Comments are due by July 1st, 2016. 

Community Events

On Thursday, June 23rd, Children's Cause for Cancer Advocacy will hold a congressional briefing on challenges and access. The briefing will take place from noon-1:30pm in Rayburn House Office Building, Room B369. For more information about the event and to RSVP, click here

On Tuesday, June 28th, the American Association for Cancer Research (AACR) will host a briefing to highlight the work of the National Cancer Moonshot initiative. The panel will take place from 12:00pm-1:30pm in the Dirksen Senate Office Building in room 562 in Washington, DC. You can view the invitation here. 

On June 28th and June 30th, join RDLA for regional Legislative Conferences in Boston (June 28th) and both Seattle and Chicago (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. Registration deadline is July 5th.

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 16, RDLA will host the annual RareVoice Awards Ceremony in Washington, DC. We are seeking nominations for outstanding advocates in the following categories: Congressional Staff, Patient Advocate/Organization for Federal Advocacy, Patient Advocate/Organization for State Advocacy, and Government Agency Staff. Click here to view the submission form - help us celebrate outstanding advocates! 

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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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