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 since 2022
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...
March 10, 2023
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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 ...
January 19, 2023
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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 ...
November 11, 2022
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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...
August 31, 2022
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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 ...
July 26, 2022
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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...
June 28, 2022
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Season 1
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Episode 3
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19:50
Dan & Patricia Lewi
In the second episode of "Real Talk Real-World Data" our host Joshua Henderson is joined by Dan and Patricia Lewi. Dan and Patricia have become leaders in patient advocacy in the Tay-Sachs community after their daughter Amelie was diagnosed wit...
June 06, 2022
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Season 1
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Episode 2
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22:15
Becky Pender
In the debut episode of "Real Talk Real-World Data" our host Joshua Henderson is joined by Rebecca Pender to discuss the rare epilepsy space. Rebeca has a daughter who lives with multiple rare diseases and is also a dedicated Team and Communiti...
April 06, 2022
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Season 1
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Episode 1
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34:00