Jul 20, 2022 | Featured, Letters Submitted
We sent a letter to members of the House and Senate Appropriations Committees regarding FY23 funding. The House bills that fund HHS and FDA both established double digit percentage increases in funding; we thanked House lawmakers for their continued support of these...
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Feb 28, 2022 | Featured, Federal Issues
On this episode of the podcast, Terry and Bob discuss accelerated drug review for rare diseases. This topic coincides with Rare Disease Day on February 28. With the Prescription Drug User Fee Act (PDUFA) up for renewal in Congress, much is at stake for the rare...
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Oct 17, 2021 | COVID-19, Featured, Podcast, Uncategorized
On this episode of the podcast, Terry and Bob discuss how the country can better prepare for the next pandemic. Better preparation is especially necessary for those with rare and chronic diseases who are most vulnerable. They discuss pending legislation to make prior...
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Oct 3, 2021 | Featured, Federal Issues, Health Policy
On this episode of the podcast, Terry and Bob discuss the latest in Congress and what it means for patients. They highlight the two spending bills Democrats are trying to pass and the implications on those with rare diseases, whom they argue deserves a seat at the...
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Mar 1, 2021 | Featured, Podcast
On this episode of the podcast, Terry and Bob discuss the barriers to care faced by those who have rare diseases. Feb. 28th is Rare Disease Day, which raises awareness with policymakers and the public about rare diseases and their impact on patients’ lives. They...
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