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Category: RareAction Network News
Today, Tell Congress We Need #CuresNow
June 7, 2016
Today, June 7, join rare disease advocates around the country and tell your Senators to support the Senate Cures Legislation. This month is the last chance for Senate Cures to pass […]
RareAction Network℠ Releases May/June State Policy Legislative Tracker
May 31, 2016
RareAction continues to make strides around the country for the 1 in 10 Americans with rare diseases. In this version of the State Policy Legislative Tracker, there is an increase […]
Rare Action Road Tour, Oklahoma
July 29, 2015
Greetings from Oklahoma, The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts). Driving through Oklahoma today, […]
Rare Action Road Tour, Tallahassee
July 28, 2015
Greetings from Tallahassee, As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules […]
July 27, 2015
Greetings from Denver, As the road tour heads further west, the distances between stops grow longer and longer. More time in the car means less time to blog. But, 10 hours and 632 […]
Rare Action Road Tour Takes on Georgia
July 23, 2015
Greetings from Atlanta, Georgia. I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force […]
NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy
March 16, 2015
NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating Center […]
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