PWSA Blog

The Stat Act Receives More Bi-Partisan Support

The STAT Act, HR 1730, just obtained more bi-partisan support in the US House of Representatives. Representative David Kustoff (R-TN) and Representative Josh Gottheimer, (D-NJ) have joined forces with 19 other US representatives to show their continued support for the rare disease community. The STAT Act will allow patients with a rare disease speedy access to therapies, inform rare disease policies and actions by creating a Rare Disease and Condition Drug Advisory Committee and fund regulatory science and related activities to support the development of therapies to treat rare disease populations.

The Benefit Act

The BENEFIT Act would require that the FDA disclose whether and how patient experience and/or preference data was used in the benefit risk assessment of a new drug. It will ensure that patient voices are being heard and allow for patient stakeholders to continue to work with FDA to refine the data that they need to make decisions.

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