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  • In-District-Lobby-Days-2015-Rectangle

    In-District Lobby Days August 3rd – September 4th!

    In-District Lobby Days have started! Rare disease advocates across the country are streaming into the offices of their legislators, asking their Congressmen and Congresswomen to support pieces of legislation aimed at helping patients with rare diseases. After just over a

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  • 21st-CC-Final-Vote

    The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77

    RDLA applauds the House for approving the 21st Century Cures Act by a strong, bipartisan vote of 344 to 77. This landmark legislation will spur scientific discovery and bio-medical innovation, providing hope for patients and their families, while also

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  • Rare-Voice-Save-the-Date

    Save the Date for the RareVoice Awards Gala: Nov. 4th

    2015 will mark the 4th year of the RareVoice Awards hosted by Rare Disease Legislative Advocates (RDLA). The purpose of the Gala is to acknowledge and honor Advocates from Congressional Staff, Government Agency and the Rare Disease Patient Community who …

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  • Congressional Scorecard header

    2014 RDLA’s Legislative Scorecard

    Rare Disease Legislative Advocates compiled a congressional scorecard to educate advocates on how their Representative has voted on issues affecting the rare disease community.  Each Representative’s score is based on membership in the Rare Disease Congressional Caucus as well as 

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Aug
26

ACTION ALERT: The Advancing Research for Neurological Diseases Act (S. 849)

Invite your U.S. Senators to attend a briefing on the Advancing Research for Neurological Diseases Act (S. 849) on September 16 from 11:30 to 12:30 in the Senate Russell Building, room 485. The briefing is sponsored by the American Academy of Neurology, American Brain Coalition, Brain Injury Association of America, Epilepsy Foundation, International Essential Tremor Foundation, National Multiple Sclerosis Society, Parkinson’s Action Network, Rare Disease Legislative Advocates, Research!America, Tourette Association of America, and United Spinal Association.

For more information and to contact your Representative, click here.

Jul
27

ACTION ALERT: Thank the House for 21st Century Cures

The House passed historic bipartisan legislation called the 21st Century Cures Act HR 6, and they deserve our thanks for ensuring that the voice of the rare disease community was heard.  Let’s show every member who supported 21st Century Cures how much their hard work means to us, and how eager we are to see this meaningful legislation make its way through the Senate.  Please take a moment to thank your representative for supporting the 21st Century Cures Act and the rare disease community.

Jul
22

NDD United Sign On Letter to End Sequestration

Sequestration poses significant risk to the funding NIH and FDA receives  – agencies which are critical to advancing our understanding of and treatments for rare diseases. Help end sequestration and the threat of cutting billions of dollars from our most crucial facilities by getting your organization to sign-on to the letter linked below: Read More

News

Advocates in North Carolina Pass State-Level legislation to Aid the Fight Against Rare Diseases

Taylor’s Tale, a Charlotte-based advocacy group in the fight against Batten disease and other rare diseases, spearheaded new legislation in North Carolina to create a new advisory council housed within the UNC-Chapel Hill School of Medicine to work towards finding

McCaul, Van Hollen, Speier, Reed, and Capito Introduce Bipartisan Childhood Cancer STAR Act

Congressman McCaul was joined by his fellow co-chair of the Childhood Cancer Caucus Congressman Chris Van Hollen (D-MD) as well as Congresswoman Jackie Speier (D-CA) in introducing the legislation in the House and Senator Jack Reed (D-RI) and Senator Shelley

Bipartisan Policy Center Releases Bold Recommendations to Advance Medical Innovation, Help Cure Life-Threatening Diseases and Improve U.S. Competitiveness in the Global Marketplace

From an article by Joann Donnellan – Today there are 10,000 known diseases in the United States, but only 500 have established treatments. Life-threatening diseases such as Alzheimer’s, cancer, heart disease, and many others lack effective treatments or cures. The

Full Committee Vote on the 21st Century Cures Act

The 21st Century Cures Act will be considered in front of the full Energy and Commerce Committee:

Tuesday, May 19, 2015 – 5:00 pm and Wednesday, May 20, 2015 – 10:00 am

2123 Rayburn

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