ALL TIMES ARE IN EASTERN TIME ZONE
StartFinishTopic/EventSpeaker
Monday, July 15thArrive/Check In
Tuesday, July 16th
Medical Symposium, Day OneModerator:
Dr. Robert Thompson Stone
Preparing for Nationwide NBS for Krabbe Disease
Welcome
NBS for Krabbe OverviewDr. Dietrich Matern
State NBS PanelModerated by Dr. Dietrich Matern
Krabbe Newborn Screening CouncilDr. Joe Orsini
How to conduct the first communication with a family who has screened positive for Krabbe
Lunch
Krabbe Transplant protocols and outcomesDr. Joanne Kurtzberg
How to prepare for your first IKD NBS patient
Clinical Trial for
Gene Therapy for Krabbe Disease
Dr. Maria Escolar
Predicting Krabbe Disease OnsetDr. Michael Gelb
ALD NBS Brief Overview and Update
MLD NBS Brief Overview and Update
CTX NBS Brief Overview and Update
Wednesday, July 17th
Medical Symposium, Day TwoModerator:
Dr. Robert Thompson Stone
Leukodystrophy Care Network
Industry updates
Consensus on longterm follow-up for Leukodystrophy NBS patients
LCN Brainstorm Session - Next steps for LCN Clinical Practice Guidelines
Overview of Vanishing White Matter