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Listen "Emergency Protocol.net"
Episode Synopsis
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
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
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