“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 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.