Openly Rare

Openly Rare

Latest Episodes

State of Possible, Live! -005
March 11, 2019

A re-broadcast of a patient panel discussion at the MassBio annual Rare Disease Day event that took place on February 28, 2019. The panel was titled “Patient Well-being Beyond Outcomes” and featured an honest and often emotional discussion on the needs...

Adam & Whitney Hayden -004
February 12, 2019

Adam Hayden suffers from a rare form of brain cancer, glioblastoma, for which there is no cure and is usually terminal. A sad fact that he, his wife Whitney, and three young children must live with each day of what will likely be the rest of his abbrev...

Joyce Kulhawik -003
October 30, 2018

Interview with Joyce Kulhawik, Emmy Award-winning arts and entertainment critic and three-time cancer survivor. Even with cancer treatment advancements a diagnosis that leads to remission and survival is still a rare occurrence.

Philip R. Reilly, M.D. -002
October 02, 2018

Interview with Philip R. Reilly, M.D., author, “Orphan: The Quest to Save Children with Rare Genetic Disorders” Dr. Reilly’s book, Orphan, is equal parts oral history and whodunit, and in his discussion with the host shares stories of genetic disease ...

Rare Disease Film -001
August 03, 2018

Interview with Daniel DeFabio and Bo Bigelow, co-creators of “DISORDER: The Rare Disease Film Festival.” Host Paul Kidwell explores the most powerful storytelling medium of movies and their ability to offer the viewer a spellbinding blend of the visual...