Standards of Care Conference Videos

6th Annual ALD Standards of Care Conference January 13-14, 2022

Session 1

Legislative Updates (Miranda McAuliffe, ALD Alliance)

Session 2

Legislative Updates (Miranda McAuliffe, ALD Alliance)

SESSION 3 | Mental Health Perspective from a Counseling Rare Disease Dad (Dr. Al, Freedman Counseling Associates)
SESSION 4 | Psychological Impact of ALD Project Update (Rene Pierpont, PhD, LP & Ashley Isaia, PhD University of Minnesota)
Session 5 | The Testicular Cryopreservation Process (Kyle Orwig, PhD Magee-Womens Research Institute)
SESSION 6 | Newborn Screening Dad Experience: A Son Diagnosed (Tom McGuire)
SESSION 7 | Outcome Measures for AMN (Ali Fatemi, MD, CMO, Kennedy Krieger Institute)
SESSION 8 | Newborn Screening State Experience: Georgia (Tricia Hall, PhD, Georgia Department of Public Health)
SESSION 9 | Standard of Care: Endocrinology (Molly Regelmann, MD, Childrens Hospital at Montefiore)
SESSION 10 | Standard of Care: Neurology (Eric Mallack, MD, NY-Presby/Weill Cornell Medicine)
SESSION 11 | Transplant & Gene Therapy Overview (Gerald Raymond, MD, Johns Hopkins Medicine)
SESSION 12 | Newborn Screening Mom Experience: A Daughter Diagnosed (Domonique Casper Shaw, PhD)
SESSION 13 | Remember The Girls: Reproductive Options Tool Kit (Taylor Kane, Founder, Remember The Girls)
SESSION 14 | Newborn Screening State Experience: Utah (Josh Bonkowsky, Md, PhD, University of Utah)
SESSION 15 | Clinical Trial Update: Vitamin D (Dohyup Kim, PhD, Stanford University)
SESSION 16 | Clinical Trial Update: bluebird bio (Stephanie Licata, bluebird bio)