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Branford Family Fights for Early Testing of Rare Disease

February 26, 2013 by Brian's Hope

By Jennifer Swift – The New Haven Register
 jswift@nhregister.com / Twitter: @nhrswift BRANFORD — What if there was a test to tell parents their son had a life-threatening illness? What if there was a cure to stop that debilitating illness? For a disease known as adrenoleukodystrophy, both exist, though little boys are still dying from …Read More

Filed Under: Brian's Hope News, In the News..., Progress of Newborn Screening, Support

State Senate Bill 465

February 23, 2013 by Brian's Hope

Can you help us? Senate Bill 465, an Act Requiring Newborn Screening for Adrenoleukodystrophy has referred to the Public Health Committee with a public hearing scheduled for Wednesday, February 27, 2013. Email our State Representative to let them know you support passage.

Filed Under: Additional Resources, Brian's Hope News, In the News..., Support

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  • FDA Grants Breakthrough Therapy Designation to Lenti-D™ for the Treatment of Cerebral Adrenoleukodystrophy May 24, 2018
  • California Begins Newborn Screening for ALD October 3, 2016
  • 20th Annual Hammerfest was an Amazing Success October 3, 2016
  • Press Conference on ALD Newborn Screening Success Held in Connecticut September 2, 2016

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