Updates

January 13, 2021January 13, 2021
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual ... Read more
January 13, 2021January 13, 2021
Planning for Your Future With Adult-onset Adrenoleukodystrophy

Learning that you have adrenomyeloneuropathy (AMN), the adult-onset form of adrenoleukodystrophy (ALD), can come as a shock. Here are some steps you might want to ... Read more
January 7, 2021January 7, 2021
Blood Neurofilament Light Chain Levels May Be Myelopathy Biomarker in ALD

Elevated blood levels of a nerve cell-derived component known as neurofilament light chain (NfL) could be a potential biomarker for myelopathy — spinal cord degeneration ... Read more
January 6, 2021
How to Improve Your Sleep if You Have Adrenoleukodystrophy (ALD)

Adrenoleukodystrophy (ALD), a rare genetic disorder that primarily affects the nervous system and adrenal glands, can cause an array of neurological symptoms that can ... Read more
December 18, 2020December 18, 2020
EURORDIS Award Contest Welcomes Photos of Life With Rare Disease

The annual EURORDIS Photo Award contest is inviting people worldwide to visually express what life is like with a rare disease, while raising awareness ... Read more

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