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Tag: Rare Disease

Patient Impact Report: Discrimination Faced by Patients with Rare Diseases

Patient Impact Report: Discrimination Faced by Patients with Rare Diseases

Feb 25, 2023 | Access

Patient Access to Rare Disease Treatments (PDF Version of the Report) Rare diseases are not as rare as the name implies. Over 25 million Americans live with rare diseases. Many rare diseases are also considered chronic diseases, since they require routine medical...
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A Mutistakeholder Approach to Rare Disease Drug Development 

A Mutistakeholder Approach to Rare Disease Drug Development 

Oct 31, 2022 | Access, Featured

Surabhi Dangi-Garimella, Ph.D. A rare disease, by the U.S. definition, is one that afflicts less than 200,000 individuals in the population at a given time. Compared to more widespread conditions such as heart disease and diabetes, ‘rare’ diseases do not receive as...
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Patients Rising Now Calls on Lawmakers to Create Federal Rare Disease Program

Patients Rising Now Calls on Lawmakers to Create Federal Rare Disease Program

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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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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