Emergency Protocol.net - podcast episode cover

Emergency Protocol.net

May 28, 202121 min
--:--
--:--
Download Metacast podcast app
Listen to this episode in Metacast mobile app
Don't just listen to podcasts. Learn from them with transcripts, summaries, and chapters for every episode. Skim, search, and bookmark insights. Learn more

Episode description

Dr Terry Derks is joined by co-author, collaborator and IMD parent, Sebastiaan te Boekhorst to discuss the emergencyprotocol.net website, an initiative to empower families and standardise care for children with FAOD and GSDs. Alongside Terry and Sebastiaan are Enrique Landelino “Lande” Contreras and Marta D’Agosto, parents of Nina, a little glycogen storage disease warrior, sharing their thoughts on what this work means to them. A generic emergency protocol for patients with inborn errors of metabolism causing fasting intolerance: A retrospective, single-center study and the generation of www.emergencyprotocol.net Alessandro Rossi et al. https://doi.org/10.1002/jimd.12386 View from inside: Nina, Glycogen storage disease warrior Written by Nina's Parents: Enrique Landelino “Lande” Contreras and Marta D'Agosto https://doi.org/10.1002/jimd.12246
For the best experience, listen in Metacast app for iOS or Android