How should Congress use its lame-duck session? First, it can save lives.
Originally published in the Washington Post: REPUBLICANS ARE signaling that they will pursue an ambitious conservative agenda when they take the reins of government next year. But before that happens,...
View ArticlePresident Obama Signs Landmark 21st Century Cures Bill into Law
NEVER doubt that your voice as a rare disease advocate matters! President Obama just signed the 21st Century Cures Act into law, after it passed both the House and Senate with broad bipartisan support....
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Travel Stipends for Rare Disease Week on Capitol Hill Increased!
The EveryLife Foundation for Rare Diseases will provide travel stipends to enable advocates from across the country to participate in Rare Disease Week on Capitol Hill, to be held February 27th through...
View ArticleWebinar Provides Overview of Rare Disease Week on Capitol Hill 2017
Rare Disease Legislative Advocates recently hosted a webinar which provided an overview of Rare Disease Week on Capitol Hill, to be held February 27th through March 2nd, 2017 in Washington, DC. The...
View ArticleVideo from Rare Disease Congressional Caucus Briefing on PDUFA Now Available
The final Rare Disease Congressional Caucus briefing of 2016 focused on the Prescription Drug User Fee Act (PDUFA), the agreement between the biopharmaceutical industry and Food and Drug Administration...
View ArticleFour Ways to Participate Remotely in Rare Disease Week on Capitol Hill
If you are not able to join us and advocates from across the country at Rare Disease Week on Capitol Hill on February 27th through March 2nd, you can still make your voice heard on Capitol Hill and...
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Rare Disease Week on Capitol Hill Engaged 600+ Advocates
Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us for at least one event during Rare Disease Week on Capitol Hill in Washington, DC from Monday,...
View ArticleRare Disease Congressional Caucus Briefing Videos Now Available
The Rare Disease Congressional Caucus hosted a briefing during Rare Disease Week on Capitol Hill which focused on Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform. After...
View ArticleNew Report on Economic Impact of NIH Research Helps Make Case for Increased...
The National Institutes of Health (NIH) is the largest biomedical research agency in the world committed to improving health by conducting and funding research. Significant cuts to the NIH budget in...
View ArticleRDLA Welcomes Sabah Bhatnagar as Program Director
Sabah Bhatnagar recently joined the EveryLife Foundation team as Program Director of Rare Disease Legislative Advocates (RDLA). She was previously the Government and Industry Affairs Coordinator at the...
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Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely
We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare...
View ArticleClik here to view.
Rare Disease Week on Capitol Hill 2018 Brings Hundreds of Advocates to...
Thank you to the 750+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st....
View ArticleStay Informed! Get the Lowdown on 2018 Elections
Heading in to election season, it’s important that the rare disease community’s voice is heard at the state and federal levels. To ensure our continued success, RDLA has put together a collection of...
View ArticleVideo from Rare Disease Congressional Caucus Briefing on PDUFA Now Available
The final Rare Disease Congressional Caucus briefing of 2016 focused on the Prescription Drug User Fee Act (PDUFA), the agreement between the biopharmaceutical industry and Food and Drug Administration...
View ArticleFour Ways to Participate Remotely in Rare Disease Week on Capitol Hill
If you are not able to join us and advocates from across the country at Rare Disease Week on Capitol Hill on February 27th through March 2nd, you can still make your voice heard on Capitol Hill and...
View ArticleClik here to view.
Rare Disease Week on Capitol Hill Engaged 600+ Advocates
Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us for at least one event during Rare Disease Week on Capitol Hill in Washington, DC from Monday,...
View ArticleRare Disease Congressional Caucus Briefing Videos Now Available
The Rare Disease Congressional Caucus hosted a briefing during Rare Disease Week on Capitol Hill which focused on Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform. After...
View ArticleNew Report on Economic Impact of NIH Research Helps Make Case for Increased...
The National Institutes of Health (NIH) is the largest biomedical research agency in the world committed to improving health by conducting and funding research. Significant cuts to the NIH budget in...
View ArticleRDLA Welcomes Sabah Bhatnagar as Program Director
Sabah Bhatnagar recently joined the EveryLife Foundation team as Program Director of Rare Disease Legislative Advocates (RDLA). She was previously the Government and Industry Affairs Coordinator at the...
View ArticleClik here to view.
Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely
We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare...
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