ALD Connect

ALD Connect Annual Meeting & Patient Learning Academy 2024

View video recordings from the 2024 ALD Connect Annual Meeting & Patient Learning Academy, which took place November 8-9, 2024 in Washington, D.C..

ALD Connect Annual General Meeting 2024

Welcome & Overview
Kathleen O’Sullivan-Fortin
ALD In the Era of Precision Medicine
Florian Eichler, MD
Large Data Analyses for Adult with Adrenoleukodystrophy
Josh Bonkowsky, MD, PhD
Proposed Design for a Phase 2 Study of Vitamin D
Keith van Haren, MD
Changing the Practice of Medicine for ALD
Troy Lund, MD PhD FAAP
Gene Editing in Adrenoleukodystrophy
Christina Nemeth Mertz, PhD, MD
Patient Experience Panel
Greg Benton
ALD Connect Awards
Kathleen O’Sullivan-Fortin
Lipodomic Fingerprinting of X Linked ALD Blood Spots
Yorrick Jaspers
Transcriptomic and Lipidomic Signatures in ALD
Courtney Demmitt-Rice
Adrenoleukodystrophy: Incidence and Natural History of Leukodystrophy in Adult Men
Marc Engelen, MD PhD
Clinical Trial Basics: Important Information for Rare Disease Patients
Zarin Tasnim, MPH
bluebird bio: An Update on Gene Therapy for ALD
Dr. Vinod Prasad
Minoryx Therapeutics Update
Arun Mistry, MBChB MRCP
Spur Therapeutics: SBT101 Program Update
Tiffany Lutz

ALD Connect Patient Learning Academy 2024

Overview of ALD Connect
Kathleen O’Sullivan-Fortin
MRI Progression of Untreated Early to Late Stage CCALD
Eric Mallack, MD MBE MS
The Grey Zone Project: Illuminating Pathogenicity of ABCD1 Variants
Stephan Kemp, PhD
Ask the Experts: Pediatrics
Moderated by Kelly Miettunen, MHA
Evolutions of Phenoype in X linked Adrenoleukodystrophy
Robert Thompson, MD
Adrenal Insufficiency in Adults
Stanley Chen Cardenas, MD
Ask the Experts: Adults
Moderated by Kathleen O’Sullivan-Fortin
Doing What Matters: Embracing Psychological Flexibility Amidst Uncertainty
Megan Clifford, LCSW-R
Closing Remarks
Kathleen O’Sullivan-Fortin

Useful Links

Annual Meeting and Patient Learning Academy
Annual Meeting and Patient Learning Academy
ALD Connect Annual Meeting & Patient Learning Academy 2023
ALD Connect Annual Meeting & Patient Learning Academy 2023
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ALD Connect Annual Meeting & Patient Learning Academy 2022