Updates

January 23, 2020January 24, 2020
Tips to Keep Stress Levels Low When You Have Adrenoleukodystrophy

Adrenoleukodystrophy (ALD) is a rare, genetic disease characterized by the accumulation of saturated very long chain fatty acids (VLCFAs) that can destroy the myelin sheath and damage ... Read more
January 21, 2020January 21, 2020
With Attention to Symptoms, Anesthesia Poses Low Risk of Complications for ALD Children, Study Finds

If physicians pay close attention to the comorbidities associated with adrenoleukodystrophy (ALD) — particularly gastroesophageal reflux disease (GERD), adrenal insufficiency, and seizures — children ... Read more
January 16, 2020January 17, 2020
Tips for Maintaining a Personal Health Record When You Have Adrenoleukodystrophy

Adrenoleukodystrophy (ALD) is a rare disease characterized by the accumulation of saturated very-long-chain fatty acids (VLCFAs) that can destroy the myelin sheath and damage ... Read more
January 14, 2020January 14, 2020
Potential X-ALD Oral Therapy, Leriglitazone, Put on Fast Track by FDA

Leriglitazone, a potential therapy for X-linked adrenoleukodystrophy (X-ALD), has been put on a fast track for review and possible approval by the U.S. Food ... Read more
January 9, 2020January 10, 2020
Adrenoleukodystrophy and Lorenzo’s Oil – What to Keep in Mind

Lorenzo’s oil is a 4:1 mixture of two unsaturated fatty acids called oleic acid and erucic acid. Lorenzo’s oil is used as a treatment of ... Read more

News

Spastic Paraparesia Can Be Only Symptom of Adrenomyeloneuropathy, Case Report Suggests
January 7, 2020January 7, 2020
Spastic paraparesia — a condition that involves weakness in the lower limbs and difficulty ...
News

Consider AMN Diagnosis in Men with Spastic Paraplegia Symptoms, Chinese Study Suggests
December 17, 2019December 17, 2019
Diagnosis of adrenomyeloneuropathy (AMN) — the adult-onset form of adrenoleukodystrophy (ALD) — should be considered in men ...
News

Gene Therapy Takes Center Stage at 2019 NORD Summit
December 10, 2019December 10, 2019
With so much recent publicity surrounding gene therapy, it’s no surprise that the topic ...
News

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 5, 2019
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or ...
Health Insight

What to Keep in Mind When Taking Corticosteroids for Adrenoleukodystrophy
December 5, 2019December 6, 2019
Corticosteroids are medications that mimic the activity of the adrenal hormones cortisol and aldosterone, ...
News

Retina Thickness Linked to Neurodegeneration in Spinal Cord of ALD Patients, Study Finds
December 3, 2019December 3, 2019
Thinning of the layer of nerve cells that form the back of the eye, ...

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Three New Mutations Associated With ALD Identified in Iranian Study
November 26, 2019November 26, 2019
Researchers found three new ABCD1 mutations associated with adrenoleukodystrophy (ALD) in three Iranian families. The ...
Diffusion MRI Shows Potential as Sensitive Measure of ALD Progression, Study Shows
November 19, 2019November 19, 2019
Diffusion magnetic resonance imaging — which measures the random motion of water molecules in ...
Dealing with Adrenal Crises When You Have Adrenoleukodystrophy
November 15, 2019
Rare Disease Film Festival Highlights Patient and Researcher Unity
November 14, 2019
Cell-based Gene Therapy Represents ‘Hope’ for X-ALD Patients, Review Study Suggests
November 12, 2019November 12, 2019
How Does Adrenoleukodystrophy Affect Life Expectancy?
November 11, 2019

Aging Raises Risk of Women Developing ALD Symptoms or More Severe Disease, Study Suggests
November 5, 2019December 3, 2019
Age is the major risk factor for adrenoleukodystrophy (ALD) symptoms and their severity in women carrying ...
Researchers Develop Efficient Method to Screen for ALD in India, Study Reports
October 29, 2019October 29, 2019
Dealing with Dysphagia When You Have Adrenoleukodystrophy
October 28, 2019
Immune Cells in Blood Samples from X-ALD Patients May Predict Response to Treatment, Study Says
October 22, 2019October 22, 2019

Understanding Blood Test Results in Adrenoleukodystrophy
October 21, 2019
One of the first diagnostic tests performed when an individual shows symptoms of adrenoleukodystrophy ...
Most ALD Patients Without MRI Lesions Retain Normal Cognitive Function, Study Suggests
October 15, 2019October 15, 2019
Adrenoleukdystrophy and ADHD
October 11, 2019

News

Researchers Discover New Genetic Mutation Among 6 Chinese Men with AMN
October 8, 2019October 8, 2019
A new study in six Chinese men with adrenomyeloneuropathy (AMN) revealed a novel ABCD1 gene ...
Health Insight

Importance of Genetic Counseling in Adrenoleukodystrophy
October 4, 2019
Adrenoleukodystrophy (ALD) is an X-linked genetic disease caused by mutations in the ABCD1 gene, ...
News

Symptoms of Peroxisomal Disorders Like X-ALD Often Mistaken for Another Disease, Study Finds
October 1, 2019October 1, 2019
Peroxisomal disorders, including adrenoleukodystrophy, are evident in a relatively high number of Chinese patients ...
Health Insight

Make the Most of Your Doctor’s Visit When You Have Adrenoleukodystrophy
September 27, 2019
Rare genetic diseases such as adrenoleukodystrophy (ALD) can pose challenges in getting proper care. An ...
News

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
September 27, 2019September 27, 2019
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, ...
News

Magenta Therapeutics’ Stem Cell Therapy MGTA-456 Earns FDA’s Regenerative Medicine Advanced Therapy Designation
September 24, 2019September 24, 2019
The U.S. Food and Drug Administration (FDA) has granted Magenta Therapeutics’ cell therapy MGTA-456 the Regenerative ...
Health Insight

Things to Consider about Stem Cell Therapy for ALD
September 20, 2019
Stem cell therapy might seem promising for children with adrenoleukodystrophy (ALD). However, not all ...
News

Clinical Trial Data Support Safety, Efficacy of Lenti-D for Boys with CALD
September 19, 2019September 19, 2019
New Phase 2/3 clinical trial data suggests that the gene therapy candidate Lenti-D ...
Health Insight

FAQs in Adrenoleukodystrophy
September 13, 2019
Genetic diseases such as adrenoleukodystrophy (ALD) can result in a multitude of problems from ...

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