Awareness

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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September is Leukodystrophy Awareness Month

September is Leukodystrophy Awareness Month! Share your story on Facebook, Twitter, and Instagram using the hashtag #LeukodystrophyAwareness and help us spread the word to ensure that leukodystrophies become a household name. Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves.

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