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Tag: Rare Disease

Season 3 | Episode 8: Speedy Rare Disease Drug Reviews

Season 3 | Episode 8: Speedy Rare Disease Drug Reviews

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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S2 | E 41: Chronic Disease + the Next Pandemic with Scott Gottlieb

S2 | E 41: Chronic Disease + the Next Pandemic with Scott Gottlieb

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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S2 | E39: Patient How-To Guide: Health Policy Advocacy

S2 | E39: Patient How-To Guide: Health Policy Advocacy

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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Season 2 | Episode 8: Barriers to Rare Disease Treatments

Season 2 | Episode 8: Barriers to Rare Disease Treatments

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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Recent Posts

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  • Have Health Plans Abandoned Rare Disease Patients?: Season 3 | Episode 19
  • Patients Rising Now Pens Letter Regarding S.2910: The Expanding Access to Low-Cost Generics Act of 2021
  • OIG Report Tags Biosimilars for Medicare and Beneficiary Savings

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