Updates

July 29, 2020July 29, 2020
Mindfulness for ALD Caregivers

Providing constant care for a patient with a chronic disease, such as adrenoleukodystrophy, can be emotionally draining and stressful. However, a practice called mindfulness ... Read more
July 22, 2020July 22, 2020
About ALD Connect

If you or a family member has adrenoleukodystrophy (ALD), then one resource you may want to use is ALD Connect. What is ALD Connect? ... Read more
July 20, 2020July 20, 2020
AMN May Be Diagnosis for Patients With Spinal Cord Lesions, Case Report Says

Adrenomyeloneuropathy (AMN) should be considered in the differential diagnosis of patients showing signs of spinal cord lesions caused by the loss of myelin, the ... Read more
July 15, 2020July 15, 2020
Preimplantation Genetic Diagnosis for Adrenoleukodystrophy

If you and your partner are both carriers for adrenoleukodystrophy (ALD), or if one of you has a type of ALD (such as adrenomyeloneuropathy (AMN) ... Read more
July 9, 2020July 9, 2020
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, ... Read more

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Updates

Mindfulness for ALD Caregivers

About ALD Connect

AMN May Be Diagnosis for Patients With Spinal Cord Lesions, Case Report Says

Preimplantation Genetic Diagnosis for Adrenoleukodystrophy

Prenatal Genetic Diagnosis for Adrenoleukodystrophy

What to Expect of a Physiotherapy Session for ALD Patients

Certain Epigenetic Medicines May Help Compensate for ABCD1 Gene Deficiency, Study Suggests

Reproductive Options for Adrenoleukodystrophy Carriers

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Autobahn Raises $76M to Advance ABX-002 Candidate for CNS Disorders

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Coalition Will Address Racial Disparities in Rare Disease Communities

Clinical Trials for Adrenoleukodystrophy

ALD May Underlie Unexplained Adrenal Insufficiency in Boys, Case Report Shows

Adrenoleukodystrophy and Vision

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

ALD Testing Should Be Done in Males with Primary Adrenal Insufficiency of Unknown Cause, Case Report Contends

Seizures in Adrenoleukodystrophy and How to Deal with Them

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

First Patient Dosed in NEXUS Phase 2 Trial of Leriglitazone in CALD

New Agreement to Expand Production Capacity for Lenti-D for CALD, Other Gene Therapies

Adrenoleukodystrophy: What Are the First Signs?

SwanBio Raises $52M to Support Studies of Gene Therapy for Adult-onset ALD

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Case Report Describes Novel ALD-causing Gene Mutation

What Is Newborn Screening and How Can It Help Identify Adrenoleukodystrophy?

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Stem Cell Transplant Safe, Effective in Halting Disease Progression in Adult-Onset Forms of ALD, Study Shows

Speech Therapy for Children with Adrenoleukodystrophy

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Mindfulness for ALD Caregivers

About ALD Connect

AMN May Be Diagnosis for Patients With Spinal Cord Lesions, Case Report Says

Preimplantation Genetic Diagnosis for Adrenoleukodystrophy

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Prenatal Genetic Diagnosis for Adrenoleukodystrophy

What to Expect of a Physiotherapy Session for ALD Patients

Certain Epigenetic Medicines May Help Compensate for ABCD1 Gene Deficiency, Study Suggests

Reproductive Options for Adrenoleukodystrophy Carriers

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Autobahn Raises $76M to Advance ABX-002 Candidate for CNS Disorders

Subscribe to our mailing list

Coalition Will Address Racial Disparities in Rare Disease Communities

Clinical Trials for Adrenoleukodystrophy

ALD May Underlie Unexplained Adrenal Insufficiency in Boys, Case Report Shows

Adrenoleukodystrophy and Vision

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

ALD Testing Should Be Done in Males with Primary Adrenal Insufficiency of Unknown Cause, Case Report Contends

Seizures in Adrenoleukodystrophy and How to Deal with Them

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

First Patient Dosed in NEXUS Phase 2 Trial of Leriglitazone in CALD

New Agreement to Expand Production Capacity for Lenti-D for CALD, Other Gene Therapies

Adrenoleukodystrophy: What Are the First Signs?

SwanBio Raises $52M to Support Studies of Gene Therapy for Adult-onset ALD

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Case Report Describes Novel ALD-causing Gene Mutation

What Is Newborn Screening and How Can It Help Identify Adrenoleukodystrophy?

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

Stem Cell Transplant Safe, Effective in Halting Disease Progression in Adult-Onset Forms of ALD, Study Shows

Speech Therapy for Children with Adrenoleukodystrophy

Pin It on Pinterest