Physician Support
Thank you to everyone who joined us both in person and virtually for the 8th Annual ALD Standards of Care Conference March 21-22, 2024. To view the presentation videos, please click the link below:
8th Annual ALD Standards of Care Conference Playlist
If you are a clinician 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
If you are a clinician who would like to help a newly diagnosed ALD NBS family register for a free care package from our foundation, please refer them to our care package registration page, or you may download the registration form here. The baby's parent or guardian can fill out the form with you and then please email it to [email protected]. Care packages include a copy of the parent's guide, a psychosocial support guide, an MRI-safe teddy bear, and a children's book about MRIs. It also includes various ways for newly diagnosed families to connect with the ALD NBS community.
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: [email protected]
A Spanish version of the guide is also available for download via the link above.
Additional guidelines have since been published that incorporate the medical monitoring of adult men with ALD (symptomatic or asymptomatic):
International Recommendations for the Diagnosis and Management of Patients With Adrenoleukodystrophy: A Consensus-Based Approach Neurology 2022 Nov 22;99(21): Pages 940-951.
8th Annual ALD Standards of Care Conference Playlist
If you are a clinician 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
If you are a clinician who would like to help a newly diagnosed ALD NBS family register for a free care package from our foundation, please refer them to our care package registration page, or you may download the registration form here. The baby's parent or guardian can fill out the form with you and then please email it to [email protected]. Care packages include a copy of the parent's guide, a psychosocial support guide, an MRI-safe teddy bear, and a children's book about MRIs. It also includes various ways for newly diagnosed families to connect with the ALD NBS community.
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: [email protected]
A Spanish version of the guide is also available for download via the link above.
Additional guidelines have since been published that incorporate the medical monitoring of adult men with ALD (symptomatic or asymptomatic):
International Recommendations for the Diagnosis and Management of Patients With Adrenoleukodystrophy: A Consensus-Based Approach Neurology 2022 Nov 22;99(21): Pages 940-951.
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