In A Parents Words – Why RARE Disease Needs ULTRA!
Roy and Reed Zeighami, couldn’t have articulated it better – why the RARE Disease Community needs the ULTRA Act of 2012. Please join Roy in viewing his two minute video! And. . . if you feel so compelled, take action!!! ULTRA Act of 2012 – need your support Over 90 organizations have signed on to [...]
Action Alert: Unlocking Lifesaving Treatments Act – ULTRA Act of 2012
In December 2011, U.S. Representatives Cliff Stearns (R-FL) and Ed Towns (D-NY), two senior members of the Energy and Commerce Committee, introduced bipartisan legislation to help spur the development of treatments for very rare diseases. The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, will improve access to the FDA’s [...]
Turning Science into Medicine – a Political Perspective
Our Government has an immense capability to help advance treatments and cures for rare diseases through incentives for industry, research grants, and improving regulatory conditions; however, our politicians often lack the public support to challenge the status quo and make good changes to the system. Our democratic system was created to be responsive to the [...]