Why Washington Should Support ULTRA Act (H.R. 3737)

It’s great to see some representatives in Washington are finally starting to understand the real healthcare issue facing tens of millions of American’s afflicted with rare diseases. You can’t improve health if potential medications remain trapped in research and biotech’s “Valley of Death” and never reach patients. This week, U.S. Representatives Cliff Stearns (R-FL) and […]

Extraordinary Measures Movie Is A National Healthcare Wake Up Call

Extraordinary Measures, a new movie centered on the efforts of John and Aileen Crowley to find a researcher who might help find a cure for their two children’s rare genetic disease (Pompe Disease), will hit theaters on January 22. I can’t wait to see this movie!  The trailer sounds eerily familiar as we are working around […]