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The ALD Alliance helps families across the United States that are newly diagnosed with adrenoleukodystrophy (ALD) by giving them the resources they need to fight this rare and devastating disease. This fight begins by making sure every baby born in the United States is tested at birth for ALD.


As of November 2024, there are still four states not testing all of their babies for ALD at birth.



We also strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of this disease. In addition to advocating for ALD newborn screening, this year we also:


  • Submitted a request to the Massachusetts Department of Health asking that they end their 5+ year pilot program for ALD, MPS I, Pompe, and SMA and move all four conditions into full-population screening. We also testified in front of the state newborn screening committee. Thank you to all of the local Massachusetts families that contributed to both efforts


  • Provided assistance to seven state newborn screening programs as they implemented ALD to their panels and provided resources and subject matter expertise to remaining states that are working towards adding the screening


  • Advocated in Washington DC for federal funding so that ALD and other federally recommended conditions may be added to state newborn screening programs in a timely manner and developed the Newborn Screening Alliance (a new branch of the ALD Alliance) to support this work


  • Hosted our 8th Annual ALD Standards of Care Conference in Brooklyn, bringing together ALD families, clinicians, researchers, newborn screening labs, and industry partners


  • Visited eight metabolic centers in New York to meet with the ALD medical care teams and discuss our family resources through our 2024 New York ALD Outreach Project


  • Sent out 40+ care packages to families across the United States receiving an ALD diagnosis for their newborn baby and followed up with any other materials requested


  • Represented our mission and gave strategic input at the International Conference on Newborn Sequencing, the American Association of Public Health Laboratories Newborn Screening Symposium, the Hunter's Hope Medical and Family Symposium, the MLD Newborn Screening Alliance Summit, the NORD Patient and Family Living Rare Forum, and Rare Disease Day programming for The Today Show in NYC



Please include your address at checkout for donations $25+ so we may mail you a free mystery tee shirt!

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