Recognizing how important access to telehealth services has been to millions of Americans during the COVID-19 pandemic,… Read More
After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical programs for the rare disease community as well as disappointing policy omissions from the final package.
For example, we had greatly… Read More
UPDATE (12/18/2015 12:20 p.m.): The House and Senate voted Friday to pass the omnibus spending bill that funds the government through September 2016. The House moved first, passing the government funding bill on a 316-113 vote. The Senate followed with a 65-33… Read More
The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research Network Act as part of the PREEMIE Reauthorization Act. President Obama signed the measure into law on November 27th. … Read More
