Openly Rare

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 of rare disease patients beyond medical treatment, and offered an insight into the day-to-day life of a patient. Paul Kidwell moderated the panel that also featured Lisa Deck, Austin Leclaire and Keisha Greaves. Connect with the creator of Openly Rare at here.

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 abbreviated life. In this episode of Openly Rare, Adam and Whitney speak frankly with host Paul Kidwell and share their dreams, thoughts on living with this illness, and Adam’s life philosophy which may be the best antidote for his illness. A moving and touching saga of life with a rare cancer. Connect with the creator of Openly Rare at here.

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. Now imagine if you have lived through this three times. That's the life of Joyce Kulhawik, whose intelligent and charming public persona as a well-known media personality never gave any indication of her personal battle. In Openly Rare she shares a candid and intimate conversation about living with cancer. Connect with the creator of Openly Rare at here.

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 through the stories of researchers, physicians, patients, and family caregivers. This episode tells the story Reilly’s bleak days as a young physician-scientist early days as a physician where there was little available to treat rare genetic diseases, to the present where biomedical research advances give new hope to patients and their families. Connect with the creator of Openly Rare at here.

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, audio and emotional. In his discussion with Daniel DeFabio and Bo Bigelow you will learn how a rare disease diagnosis for each of these “Rare Dads” led to an introduction at an industry conference, and ultimately the brainchild of the film festival. Kidwell discusses the complexities of putting on an event of this scope, how life translates into art, and the plans for the next festival. 
To learn more about Bo and Daniel's projects go to rarediseasefilmfestival.com.  Connect with the creator of Openly Rare at here.