Brian’s Hope is proud to share that bluebird bio in Cambridge, MA has announced that interim data for the treatment of cerebral adrenoleukodystrophy (CALD) will be presented during the Clinical Trials at the American Academy of Neurology (AAN) 2016 Annual Meeting on April 20, 2016. Read the complete press release!
ALD is Added to the Recommended Uniform Screening Panel (RUSP)!
On February 17th, 2016, the Secretary of the Department of Health & Human Services, Silvia Burwell, approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP), the federal list of genetic diseases recommended for state newborn screening programs. The addition of ALD to the RUSP will expedite the process of adding ALD …Read More
Connecticut Newborn Screening Update on FOXCT
We are grateful to FOXCT’s Sarah Cody’s follow-up piece on newborn screening for ALD in CT. Hoping CT will be ready to test in a few months. If you don’t look for it you won’t find it until it’s too late. We advocates will be working on this until all states are testing. It shouldn’t …Read More
ALD Newborn Screening has been Approved for the Recommended Uniform Screening Panel!
On August 27th at a meeting of the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children in Rockville, Maryland, ALD newborn screening was approved for addition to the Recommended Uniform Screening Panel. This was the culmination of 3 years of work by researchers, practitioners and patient advocates. Approval …Read More
Join the Movement and #SaveTheBoys with Brian’s Hope
Every 36 hours, a newborn baby is born with adrenoleukodystrophy, also known as ALD. ALD is a genetic disease that attacks the brain and can cause blindness, deafness, loss of muscle control or even death. If detected early, ALD can be treated; however currently there is no mandatory screening for this disease. Join Brian’s Hope …Read More
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