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Policy

A total of 77 posts are filed under Policy
RDLA’s Rare Disease Week on Capitol Hill Itinerary
Register TODAY to join fellow rare disease patients, caregivers and other advocates from across the country at Rare Disease Week on Capitol… Continue Reading
Trump’s Top Choices for FDA Could Bolster the ‘Right-to-Try’ Movement
By DYLAN SCOTT @dylanlscott   WASHINGTON — Advocates of “right-to-try” laws — giving terminally ill patients wider latitude to… Continue Reading
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