Real Talk, Real World Data
“Real Talk, Real-World Data” is an original podcast series developed by Pulse Infoframe and hosted by Joshua Henderson, Head of Rare Diseases. Our show features patients and patient advocates, industry and researchers and their unique perspectives on the incredible potential of registries, natural history studies, and other real-world data.If you want to hear meaningful conversations about the value, the challenges and the impact of real-world data, then this is the place for you. Stay tuned for updates on new episodes and guests as well as highlights from the show.
Episodes
8 episodes
Sarita Edwards- Trisomy 18 Patient Advocate and Mother
April is Trisomy awareness month so we want you to hear from one of the most out-spoken patient advocates in this space, Sarita Edwards. Sarita is the co-founder of the E.WE Foundation, a charity with the goal of supporting families with a love...
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Season 1
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Episode 8
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25:16
Dr. Scott Ernst & Dr. Femida Gwadry Sridhar- The Global Melanoma Research Network
Back in 2013, Dr. Scott Ernst and Dr. Femida Gwadry-Sridhar both recognized some problems with the way people were conducting research for melanoma. Collaboration was lacking and crucial patient data was being siloed and not shared amongst the ...
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Season 1
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Episode 7
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26:04
Dan Shockley
A positive mindset is one of the keys to living a happy life. But maintaining optimism in the face of adversity is much easier said than done. Especially when that adversity comes in the form of a rare medical condition diagnosis. However, our ...
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Season 1
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Episode 6
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31:00
Tracy Dixon-Salazar
Motherhood is one of the greatest experiences in a woman's life, but it comes with many challenges. These challenges only become greater when your child lives with a rare disease. Neuroscientist, geneticist, patient advocate, and Executive Dire...
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Season 1
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Episode 5
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33:08
Lori Straus
In this episode of "Real Talk, Real-World Data", Joshua is joined by freelance content writer and author Lori Straus. Lori has been writing content in the rare disease space for years and has contributed several articles to Pulse Infoframe. On ...
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Season 1
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Episode 4
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22:01
Ana Mingorance
On the third episode of "Real Talk, Real-World Data", Joshua is joined by Ana Mingorance. Since she was a child, Ana has had the goal of curing a disease. She carried this with her into adulthood and sits down to share some insights she has tak...
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Season 1
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Episode 3
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19:50