1
Recognize

Consider the possibility of adrenoleukodystrophy (ALD) before it's too late

Adrenal insufficiency may be the first signal
Recognize the link
Patients are actor portrayals.
Physician is a pediatric endocrinologist.
1
Recognize

Consider the possibility of adrenoleukodystrophy (ALD) before it's too late

Adrenal insufficiency may be the first signal
Recognize the link
Patients are actor portrayals.
Physician is a pediatric endocrinologist.
2
Measure

An early diagnosis of ALD can save lives1

ALD is a rare, X-linked genetic disease characterized by an accumulation of very long-chain fatty acids (VLCFAs) in various parts of the body.2,3 As it is X-linked, this disorder affects males more severely.2 ALD can progress to a serious, life-threatening condition called cerebral ALD, which can lead to irreversible brain damage.1,2,4,5

As part of the initial evaluation of preadolescent boys with primary adrenal insufficiency, the Endocrine Society Clinical Practice Guidelines recommend screening for elevated VLCFA levels in plasma in order to detect the possibility of ALD, which may be further confirmed through genetic testing.2,6
Measure VLCFA levels in plasma
3
Consult

Consult and collaborate to monitor progression

Vigilant observation and timely intervention are crucial for improved outcomes1

Monitoring disease progression to cerebral ALD relies on an integrated care team, including both pediatric endocrinologists and neurologists who specialize in ALD.1

Refer your patient to a neurologist or ALD specialist, so that they are able to monitor for disease progression to cerebral ALD and provide appropriate care.1

Monitoring ALD

Help your patients learn more about ALD, the importance of monitoring and building a care team.

Visit Navigating ALD for Patient Resources

Help your patients learn more about ALD, the importance of monitoring and building a care team.

Visit Navigating ALD for Patient Resources
References: 1. Moser HW, Mahmood A, Raymond GV. X‑linked adrenoleukodystrophy. Nat Clin Pract Neurol. 2007;3(3):140-151. 2. Bezman L, Moser AB, Raymond GV, et al. Adrenoleukodystrophy: incidence, new mutation rate, and results of extended family screening. Ann Neurol. 2001;49(4):512-517. 3. Kemp S, Huffnagel IC, Linthorst GE, Wanders RJ, Engelen M. Adrenoleukodystrophy – neuroendocrine pathogenesis and redefinition of natural history. Nat Rev Endocrinol. 2016;12(10):606-615. 4. Miller WP, Rothman SM, Nascene D, et al. Outcomes after allogenic hematopoietic cell transplantation for childhood cerebral adrenoleukodystrophy: the largest single-institution cohort report. Blood. 2011;118(7):1971-1978. 5. Engelen M, Kemp S, Poll‑The BT. X‑linked adrenoleukodystrophy: pathogenesis and treatment. Curr Neurol Neurosci Rep. 2014;14(10):486. 6. Bornstein SR, Allolio B, Arlt W, et al. Diagnosis and Treatment of Primary Adrenal Insufficiency: An Endocrine Society Clinical Practice Guideline. J Clin Endocrinol Metab. 2016;101(2):364-389.