We created this guide for living with ALD (Adrenoleukodystrophy) to not only provide medically advised resources and information, but to give families hope.
The content in this Parent Guide and on our website has been reviewed and approved by our Board-Certified Clinician Members on the Board of Directors at ALD Alliance, all of whom are experts in ALD.
These monitoring protocols were derived from the published medical guidelines listed below. If your health insurance company is denying your child coverage for a monitoring procedure, please cite these resources in your claim or forward these publications to the doctor caring for your child so that they may help advocate on your child’s behalf.
Resources to Cite for Health Insurance:
Adrenoleukodystrophy: Guidance for Adrenal Surveillance in Males Identified by Newborn ScreenThe Journal of Clinical Endocrinology & Metabolism, Volume 103, Issue 11, November 2018, Pages 4324–4331
MRI surveillance of boys with X-linked adrenoleukodystrophy identified by newborn screening: Meta-analysis and consensus guidelinesThe Journal of Inherited Metabolic Disease, Volume 44, Issue 3, December 2020, Pages 728-739