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. 

Chapters

• 1:49 About Lori and how she wound up in the rare disease space
• 5:03 How Lori's diagnosis created additional sense of meaning for her work
• 6:20 Resources available at the time of Lori's diagnosis
• 11:47 How would you describe a patient registry and its value to somebody who is unfamiliar with the concept?
• 14:38 Tips for patient advocacy groups who are looking to promote a registry or natural history study
• 17:35 Any content producing or management tools that you would suggest using?