Emory University Newborn Screening Study
Emory University Newborn Screening Study Emory University in Georgia is recruiting ALD patients of any age and gender to give a single blood sample to provide quality control for newborn screening…
2019 Annual Meeting Registration
2019 Annual Meeting Registration Register now for our 2019 Annual Meeting & Patient Learning Academy. Registration will close on October 1st, 2019. Limited financial assistance is available for travel and other costs.…
2018 Annual Meeting
2018 Annual Meeting ALD Connect 2018 Annual Meeting & Patient Learning Academy Videos 2018 Patient Learning Academy Videos 2018 Annual Meeting Videos Day 1: ALD Connect Consortium Annual Meeting…
Tanay and his family find hope for ALD with Gene Therapy trial
Tanay and his family find hope for ALD with Gene Therapy trial Tanay Suri and his family traveled halfway around the world for a groundbreaking adrenoleukodystrophy (ALD) treatment at University…
ALD Comprehensive Clinic Expands to Help More Adrenoleukodystrophy Patients and Families
ALD Comprehensive Clinic Expands to Help More Adrenoleukodystrophy Patients and Families Our center at University of Minnesota Masonic Children’s Hospital has decades of experience treating adrenoleukodystrophy. Now we’re expanding our…
Recommended Uniform Screening Panel (RUSP)
ALD was added to the Recommended Uniform Screening Panel (RUSP), a federal list of all genetic diseases recommended for state newborn screening (NBS) programs, in February 2016. However, at this…
ALD Connect SCOUT program
ALD Connect SCOUT program With the creation of the NBS SCOUT Initiative (Supportive Community Outreach & Understanding Together), ALD Connect will draw upon the experience of previously-diagnosed ALD families and…
Parents’ vigilance gives son a fighting chance against Adrenoleukodystrophy
Parents’ vigilance gives son a fighting chance against Adrenoleukodystrophy 12-year-old Nicholas Purschke plans to run a triathlon this year, a feat that wouldn’t be possible if early screening hadn’t found…