Emergency Protocol.net

Dr Terry Derks is joined by co-author, collaborat…

An episode of the JIMD Podcasts podcast, hosted by Journal of Inherited Metabolic Disease, titled "Emergency Protocol.net" was published on May 28, 2021 and runs 21 minutes.

May 28, 2021 ·21m · JIMD Podcasts

Summary

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

Episode Description