Updates

February 24, 2021February 24, 2021
New Cut-off Levels for Blood VLCFAs May Aid X-ALD Diagnosis

Proposed new cut-off levels for values of very long-chain fatty acids, or VLCFAs — whose buildup ... Read more
February 17, 2021February 17, 2021
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according ... Read more
February 17, 2021February 17, 2021
Adrenoleukodystrophy and Diet

Adrenoleukodystrophy (ALD) is a rare genetic disease in which very long-chain fatty acids (VLCFAs) build up ... Read more
February 10, 2021February 11, 2021
Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on ... Read more
February 10, 2021February 10, 2021
Emergency Management of Adrenal Insufficiency in Adrenoleukodystrophy

An estimated 80% of men and boys with adrenoleukodystrophy (ALD) develop adrenal insufficiency — when the ... Read more

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