19 min listen
What Rare Disease Patients and Families Need From Clinicians: Philippe Pakter, Rare Disease Parent
FromRaise the Line
What Rare Disease Patients and Families Need From Clinicians: Philippe Pakter, Rare Disease Parent
FromRaise the Line
ratings:
Length:
50 minutes
Released:
Aug 9, 2022
Format:
Podcast episode
Description
“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.
Released:
Aug 9, 2022
Format:
Podcast episode
Titles in the series (100)
Dr. Patrice Harris - President, American Medical Association: The Coronavirus crisis has presented unprecedented challenges for physicians. Retired doctors are back in their white coats helping on the frontlines while medical students are being allowed to practice before graduation, and community physicians are struggling to hold on to their practices as people avoid getting routine care. Keeping a sharp eye on all of it is Dr. Patrice Harris, president of the American Medical Association. As you'll hear in this conversation with Dr. Rishi Desai, Harris is a forceful advocate for protecting the safety of her members, basing policy decisions on evidence and making sure we fully understand the disparate impact COVID-19 is having based on race. And as a child psychiatrist, she also drops some wisdom for parents on how to talk to their kids about these unsettling times. by Raise the Line