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Policy

A total of 75 posts are filed under Policy
EveryLife Foundation Sets Newborn Screening Goals for 2017
Following their legislative success in California with the passage of Senate Bill 1095) last year, The EveryLife Foundation is seeking to… Continue Reading
Registration Now Open for Rare Disease Week on Capitol Hill
Join fellow rare disease patients, caregivers and other advocates from across the country at Rare Disease Week on Capitol… Continue Reading
21st Century Cures Act Becomes Law!
From the EveryLife Foundation After a multi-year advocacy campaign, President Obama signed the 21st Century Cures Act into law! This bill… Continue Reading
Join RDLA For a Webinar on Dec. 7th, More Information on Travel Stipends
We are excited to host patients, caregivers and other advocates from across the country at Rare Disease Week on Capitol Hill, to be… Continue Reading
21st Century Cures Act passed by the House today, OPEN ACT dropped from bill
Source On Friday, November 25, leaders of the House of Representatives Energy and Commerce Committee and Senate Health, Education, Labor and… Continue Reading
Chairman Fred Upton Kicks Off Debate on #CuresNow with Powerful Speech
Below is the speech, as prepared, by Chairman Fred Upton for the #CuresNow movement. There is not a single person in this chamber or… Continue Reading
Save the Date for Rare Disease Week on Capitol Hill: February 27th – March 2nd
The Rare Disease Legislative Associates are excited to host patients, caregivers, physicians and other advocates from across the country at… Continue Reading
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