Advocacy

ALD Newborn Screening Family Retreat at Painted Turtle Camp

Please join us Friday, October 4th through Sunday, October 6th for a relaxing weekend retreat intended specifically for families with ALD boys identified through Newborn Screening. The retreat will be held at the famous Painted Turtle Camp in the San Gabriel Mountains of Southern California. Registration fees ($75 total per family) includes

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Newborn Screening Family Education Survey

This survey is being conducted by Expecting Health, a non-profit organization focused on engaging families and health professionals in pregnancy and newborn health: https://www.surveymonkey.com/r/P5D363H. If you agree to participate, you will be presented with an online survey. The goal of this survey is to learn about families’ needs and priorities

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Washington DC Introduces ALD Newborn Screening Legislation

Council member Brandon Todd of Washington DC introduced the “Newborn Screening Amendment Act of 2018,” which adds the test for Adrenoleukodystrophy, better known as ALD, to the list of newborn screenings that District hospitals must offer. ALD is a rare genetic brain disorder, affecting approximately one in every 18,000 people,

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