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ALD Connect Annual Meeting & Patient Learning Academy 2018
ALD Connect Annual Meeting & Patient Learning Academy 2018
View video recordings from the 2018 ALD Connect Annual Meeting & Patient Learning Academy.
ALD Connect Annual Meeting 2018
Welcome: Updates on ALD and AMN (Florian Eichler)
Centers of Excellence Standards & Care Management (Adeline Vanverver)
LCN Clinical Practice Guidelines (Anna Grantham)
Newborn Screening Response and Long-Term Monitoring (Laura Adang)
Imaging Advances in AMN: Spinal Cord (Bela Turk)
Modeling Cerebral ALD Lesion Growth (Eric Mallack)
Expert Consensus Guidelines – A Transatlantic Approach (Marc Engelen)
Progress in Gene Therapy for ALD (Christine Duncan)
Risk & Rewards Stabilizing ALD With Transplant (Troy Lund)
Cord Blood Transplantation for Children (Vinod Prasad)
Understanding Dysfunction of the Blood-Brain Barrier in ALD (Patricia Musolino, Alexander Lenail)
Industry Panel (Cleland/Opheris, DeWitt/Deuterx-Poxel, Fortin/bluebird bio, Meya/Minoryx, Cromwell/Sanofi Genzyme)
Patient Learning Academy 2018
<p style=”text-align: left;”>November 2nd and 3rd, 2018 – Philadelphia, PA</p>
Welcome (Amber Salzman)
Overview & Discussion of ALD Biology (Florian Eichler)
Experimental Treatment & Decision-Making (Ben Lenail)
Endocrine Management Across a Lifetime (Jeff Roizen)
Positive Exposure (Rick Guidotti)
Clinical Trial Updates (Keith Van Haren)
North Carolina Newborn Screening Pilot Program Results (Jennifer Taylor)
US ALD Newborn Screening Update (Elisa Seeger)
It Takes An Army to Make Change (Dean Suhr)
Living as a Man With ALD (Chris Kaag)
Women With ALD: Not Just Carriers (Taylor Kane)
Mental Health Impact: Depression & Suicide (Emma Hayes)
Transitioning Care – From Pediatrics to Adult (Catherine Beeker)
ALD Life: The UK Experience (Karen Harrison)
Urogynecologic Considerations in ALD (Kristine Whitmore)
Useful Links
Annual Meeting and Patient Learning Academy
ALD Connect Annual Meeting & Patient Learning Academy 2022
ALD Connect Annual Meeting & Patient Learning Academy 2021
