Rare Genomics / RareShare Podcast Series: Ask the Expert & Patient Navigation - Receiving a Rare Disease Diagnosis: A Huntington’s Disease Patient Shares His Experience and Advice for Coping with a New Diagnosis (Patient Navigation)

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

05/14/18 • 24 min

Rare Genomics / RareShare Podcast Series: Ask the Expert & 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)

Previous Episode

The Power of Community: How Patient Communities Provide Hope and Help Further Rare Disease Research (Patient Navigation)

Next Episode

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

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