| DRAFT AGENDA - Subject to Change | |||||
| ALL TIMES ARE IN EASTERN TIME ZONE | |||||
| Start | Finish | Topic/Event | Speaker | ||
| Monday, July 15th | Arrive/Check In | ||||
| Tuesday, July 16th | |||||
| Medical Symposium, Day One | Moderator: Dr. Robert Thompson Stone | ||||
| Preparing for Nationwide NBS for Krabbe Disease | |||||
| Welcome | |||||
| NBS for Krabbe Overview | Dr. Dietrich Matern | ||||
| State NBS Panel | Moderated by Dr. Dietrich Matern | ||||
| Krabbe Newborn Screening Council | Dr. Joe Orsini | ||||
| How to conduct the first communication with a family who has screened positive for Krabbe | |||||
| Lunch | |||||
| Krabbe Transplant protocols and outcomes | Dr. 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 Onset | Dr. 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 Two | Moderator: 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 | |||||
