ALD Connect

ALD Connect Annual Meeting & Patient Learning Academy 2019

View video recordings from the 2019 ALD Connect Annual Meeting & Patient Learning Academy, which took place November 8-9, 2019 in Waltham, MA.

ALD Connect Annual Meeting 2019

Welcome: Myelin Project and ALD Updates (Florian Eichler)

Big Data & Little Fish (Josh Bonkowsky)

SCAN: Screening for ALD in the Netherlands (Stephan Kemp)

ALD Newborn Screening – Progress and Challenges (Elisa Seeger)

Newborn Bloodspot Screening: A Global Perspective (Bob Wyborn)

GLIA-CTN Global Leukodystrophy Initiative – Clinical Trials Network (Adeline Vanderver)

Ask an Expert: Patient Panel (Ben Lenail)

ALD Connect Awards

Engraftment Disease Remission & Clinical Trial Update (Troy Lund)

Early Lesion Growth Analysis in Cerebral ALD (Erik Mallack)

Pilot Scale Study of Human Plasma Identifies Potential Biomarkers to Predict X ALD (Jaspreet Singh)

Generation of ALD Brain Organoids as a Preclinical Model (Vivi Heine)

Update on Dendrimer Therapy Organoids as a Preclinical Model (Ali Fatemi)

Biomarker Discovery for Disease Onset or Therapeutic Intervention Studies (Yorrick Jaspers)

Industry Panel (Amber Salzman)

Patient Learning Academy 2019


<p style=”text-align: left;”>November 9th, 2019 – Waltham, MA</p>

PLA Welcome (Kathleen O’Sullivan-Fortin and Greg Benton)

Community Call Update (Kathleen O’Sullivan-Fortin)

LCN Update and Clinical Practice Guidelines (Jacque Waggoner)

Understanding Urinary and Bowel Dysfunction in Adults With ALD (Camille Corre)

Movement Disorder Studies in Women With ALD (Melanie Supnet)

Symptomatic Therapy and Rehabilitation (Brian Wishart)

ALD Connect Ambassador Award Presentation (Kathleen O’Sullivan-Fortin)

Portrait of a Family With ALD

Supporting the ALD Family (Kathryn Weagle)

Update on Stanford Trials (Keith Van Haren)

2020 ALD Family Retreat

Adrenal Insufficiency It’s Not Just My Summer Tan

Clinical Panel

Useful Links

Annual Meeting and Patient Learning Academy
Annual Meeting and Patient Learning Academy
ALD Connect Annual Meeting & Patient Learning Academy 2022
ALD Connect Annual Meeting & Patient Learning Academy 2022
ALD Connect Annual Meeting & Patient Learning Academy 2021
ALD Connect Annual Meeting & Patient Learning Academy 2021