Tag: _Policy

A total of 21 posts are filed under _Policy
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
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
Regional Legislative Conferences to Help Advocates Prepare for In-District Lobby Days
Rare Disease Legislative Advocates (RDLA) will host three regional Legislative Conferences in late June to teach advocates about the… Continue Reading
Everylife Foundation’s Community Congress Annual Meeting 11/4
Annual Meeting Wednesday, November 4, 2015 The American Association for the Advancement of Science (AAAS) 1200 New York Avenue, NW… Continue Reading
Why the 21st Century Cures Act May Be in Trouble in the Senate
The rare disease community in July celebrated the passage in the House of the 21st Century Cures Act, legislation that promises among other… Continue Reading
Jill Ziegler Talks How To Go From Enthusiast to Advocate
Either as a patient, a parent or a caregiver–you are in the rare disease community. You know how to rely on others and how to lend… Continue Reading
Action Alert: Congress Nearing Vote on “Open Act”–We Need Your Voice!
Congress is close to voting on a historic bill, the 21st Century Cures Act (HR 6), that provides incentives to develop treatments for… Continue Reading
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