Physician Support
Our annual ALD Standards of Care Meeting is held every January, typically during the days preceding the Martin Luther King Jr. holiday weekend. This is an opportunity for newborn screening labs, clinicians, and families to collaborate to ensure the best possible care for those affected by ALD. Note about 2023 conference: We will be moving our annual meeting to the month of March. Date to be announced soon.
Thank you to everyone who joined us for the 6th annual conference in January 2022.
To view the presentation videos, please click below:
6th Annual ALD Standards of Care Conference
If you are a physician looking for materials to share with your families regarding ALD, please feel free to refer them to our other site:
A Parent's Guide to ALD
The content in our Parent Guide and 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:
Adrenoleukodystrophy: Guidance for Adrenal Surveillance in Males Identified by Newborn Screen
The 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 guidelines The Journal of Inherited Metabolic Disease, Volume 44, Issue 3, December 2020, Pages 728-739
Patient families: 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.
To request a printed copy of this guide, please email: miranda@aldalliance.org
A Spanish version of the guide is also available for download via the link above.
Thank you to our sponsors of the 6th Annual ALD Standards of Care Conference:
Thank you to everyone who joined us for the 6th annual conference in January 2022.
To view the presentation videos, please click below:
6th Annual ALD Standards of Care Conference
If you are a physician looking for materials to share with your families regarding ALD, please feel free to refer them to our other site:
A Parent's Guide to ALD
The content in our Parent Guide and 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:
Adrenoleukodystrophy: Guidance for Adrenal Surveillance in Males Identified by Newborn Screen
The 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 guidelines The Journal of Inherited Metabolic Disease, Volume 44, Issue 3, December 2020, Pages 728-739
Patient families: 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.
To request a printed copy of this guide, please email: miranda@aldalliance.org
A Spanish version of the guide is also available for download via the link above.
Thank you to our sponsors of the 6th Annual ALD Standards of Care Conference:
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