Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community

Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation

English - August 14, 2018 02:30 - 33 minutes - 15.4 MB - ★★★★ - 2 ratings
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Previous Episode: Receiving a Rare Disease Diagnosis: A Huntington’s Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)

Next Episode: Growing up With a Rare Disease: An Alagille Syndrome Warrior on Understanding Her Rare Disease and Participating in Research

Anne Bruns’ son Ethan was diagnosed with Atypical Hemolytic Uremic syndrome (Atypical HUS), when he was just 8 years old. Anne tells us how she, Ethan and the rest of their family first reacted to the diagnosis, shares her advice for other families coping with a rare disease diagnosis, and lets us know how Ethan is doing today. www.rareshare.org