Tag: _Policy

A total of 29 posts are filed under _Policy
Gottlieb’s Aggressive Plans to Streamline the Orphan Drug Review Process
Thanks to Rare Disease Report for this article. On June 20, 2017, Food and Drug Administration (FDA) Commissioner Scott Gottlieb,… Continue Reading
Law to Expand and Improve Newborn Screening Enacted in Florida
The EveryLife Foundation for Rare Diseases applauds Governor Rick Scott,  Senator Lauren Book (D-FL) and Representative Heather Fitzenhagen… Continue Reading
Government Submits Rare Disease Policy to Delhi HC
In November 2016, the Delhi high court had ordered the government to finalise a policy on rare disease as patients repeatedly petitioned the… Continue Reading
NYT: Senate Confirms Scott Gottlieb to Head F.D.A.
The Senate voted 57 to 42 on Tuesday to confirm Dr. Scott Gottlieb as commissioner of the Food and Drug Administration, where he will be… Continue Reading
Join BIO Action! A New Way to Advocate
On the forefront of furthering lifesaving, landmark innovation, the biotechnology industry in 2017 promises to continue to heal, fuel and… Continue Reading
RARECast: Rare Disease Advocates Push for Incentives to Drugmakers Pulled from Cures Act
  Legislation that would provide incentives to drugmakers to repurpose existing pharmaceuticals as rare disease treatments is once again in… Continue Reading
Facebook-Town-Hall
Town Hall Launch Gives Platform for Patient Advocacy – Will You Inbox Your Reps?
Facebook announced a new feature this week that allows users to search their address to find local representatives as a means to easily… Continue Reading
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