Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation - Coping With Your Child's Diagnosis: The Mother of a Rare Disease Patient on How She Found a Supportive Community

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

08/14/18 • 33 min

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

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

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Receiving a Rare Disease Diagnosis: A Huntington’s Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)

Rare Genomics Institute RareShare Ask the Expert:Podcast Series, Disease Specific Q&A Sessions, For feedbacks contact, Scientific Director, Rare Genomics Institute: Deepa Kushwaha, [email protected] (Music credit: www.bensound.com)

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

Being born with, and growing up with a rare disease means you don’t necessarily know any other way of life. This month we spoke with 23-year-old Anna Laurent, who was born with Alagille Syndrome, and as she grew up, she gradually learned about what that meant, and how her life was different from other kids’ lives. She tells us about her symptoms and treatment experiences, participating in research, and her involvement with rare disease advocacy. Anna also recently graduated from college so she tells us about her new job! Visit RareShare.org to find your community.