What Rare Disease Patients and Families Need From Clinicians: Philippe Pakter, Rare Disease Parent
“It's a strange odyssey being a rare disease parent. It sort of forces you to question everything about life,” says Philippe Pakter, whose daughter Lysiane was born with Pierre Robin Sequence, a condition that impedes normal breathing and feeding. In this compelling interview with Shiv Gaglani, he shares the wrenching details of his family’s daunting emotional, medical and legal journey. “It's tough, but you just have to keep going and from the hardship can potentially come very beautiful things.” Among the brighter spots of their story are finding a non-surgical treatment that helped with part of Lysiane’s condition, and connecting with a network of dedicated clinicians focused on improving treatments for Pierre Robin Sequence. (Pakter recently interviewed one of those doctors, Stanford’s HyeRan Choo, about non-surgical approaches. Listen here.) Don’t miss this opportunity to hear hard won wisdom about ways clinicians can approach their work to be mindful of rare diseases and how they can be a resource for patients and families who are often desperate for answers. Pakter is a great example of how well-informed rare disease family members are, and why clinicians should listen closely to what they have to say.