• About
    • Mission
    • Meet Brian
    • Meet the Kelleys
    • Brian’s Artwork
    • Photo Gallery
  • ALD
    • What is ALD?
    • Diagnosis & Treatment
    • Newborn Screening FAQs
    • Support Newborn Screening
    • Educational Videos
    • Additional Resources
  • Events
    • Hammerfest Triathlon
    • Lions Golf
    • Hook & Slice
  • Take Action
    • Volunteer/Sponsor
    • Donate
  • News
  • Contact

ALD Newborn Screening has been Approved for the Recommended Uniform Screening Panel!

September 2, 2015 by Brian's Hope

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 by this committee means the test meets the highest of standards. With this decision, Public Health Directors in all states can be assured this test and follow up protocol are sound and reliable, ready for addition to their state’s newborn screening panel. We expect that shortly after Secretary Burwell formally adds this to the panel, CT, CA, NJ, TN and IL will start the implementation process.

This is a great achievement but there is more work to be done until EVERY baby born in our country will be tested for ALD. A child’s zip code should not determine whether or not he/she is screened for this insidious disease.

Filed Under: In the News..., Progress of Newborn Screening

Updates

Latest News on ALD

Recent Posts

  • 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

Sort By Topic:

Sort by Date:

Newborn Screening
Status Nationwide

ALD
Awareness

Read the
Latest News

Brian’s Hope is a 501(c)(3) Charitable Foundation

Built by the team at Acara Partners