Rarest of the Rare: Neena Nizar and the Jansen's Foundation

In this episode, Ilana has a conversation with Jansen's Foundation president and founder Neena Nizar. Jansen's Disease is one one of the rarest disorders in the world, with Neena reporting only 10 known cases worldwide when she started her foundation in 2017. This interview was recorded in February 2020 at NIH Rare Disease Day. Since then, Neena reports that the COVID-19 pandemic has understandably slowed some of the Jansen's Foundation's work, but that they are moving things back on track soon. Read about Neena and her family in the New York Times, here: https://www.nytimes.com/2020/07/07/health/rare-diseases.html