“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.
Episode 104: 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 top of her work as an author, Lori also lives with a rare form of epilepsy called Jeavons syndrome that she only recently was diagnosed with after years of uncertainty. Join us as Joshua and Lori break down some of the best practices for patient advocates who want to create compelling written content and discuss Lori’s one of a kind rare disease journey.
Episode 103: 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 taken away over her 13 years in the industry. Ana is the founder and CEO of Singularity Bio, a biotech startup with the mission to make all complex conditions treatable by developing treatment to induce specific cell states to fight diseases. Prior to this role, Ana was the Chief Development Officer at the Loulou Foundation and Scientific Director at the Dravet Syndrome Foundation in Spain. Ana has spent her career working to make patients a bigger part of drug discovery and drug development by supporting patient groups to be involved in R&D. She has also written a short titled “#ImpatientRevolution” that contains advice and tools for patient groups who are looking to be involved in drug development and clinical trials. The book is free to download and can be viewed at (http://www.draccon.com/impatient)
Ana and Joshua cover a wide variety of topics that range from the challenges and best practices for working with multiple pharma companies on the same study, how patient leadership will evolve to become more important in the future, how to maximize user retention in a registry, the role real-world data amplifying the patients voice and much more. This is the third installment in our series about rare epilepsy. Check out our latest episode and be part of the conversation!
Episode 102: 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 with this rare condition at a young age in 2011. Dan and Patricia started the Cure & Action for Tay Sachs (CATS) Foundation only three months after Amelie’s diagnosis and have been instrumental in bringing the disease community together as well as supporting research efforts by establishing a global patient registry and European consortium for Tay Sachs. Dan is also the head of business development and a member of the senior management team at Pulse Infoframe. Joshua, Dan and Patricia discuss their diagnostic journey with Amelie, what motivated them to become so involved in patient advocacy, and best practices for other advocacy groups who want to be part of research.
This is the second episode in our series about rare epilepsies. Thank you for joining us for our second episode, and we are excited to make you part of the conversation.
Episode 101 — Rebecca 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. Rebecca has a daughter who lives with multiple rare diseases and is also a dedicated Team and Communities Associate at Rare Revolution Magazine. Rebecca and Joshua discuss the diagnostic journey, the role parents play in this experience as well as the potential of real-world data and collaboration between healthcare providers and patients. This is the first installment in our series about rare epilepsy. Below are some topics covered in todays episode. Thank you for joining us for the debut episode and we are excited to include you in the conversation.