Scientific, Medical & Family Conference

Family Sessions

July 22, 2016 ~ Clearwater Beach, FL

Genetics & Carrier Issues of Barth Syndrome

From DNA to TAZ variants ...is this a mutation or not?
Iris L. Gonzalez, PhD — A. I. duPont Hospital for Children, Wilmington, DE, USA

Consultation Handout

Tips and strategies for talking to your children about genetics
Rebecca L. McClellan, MGC, CGC — Kennedy Krieger Institute, Baltimore, MD; Cynthia James, ScM, PhD — Johns Hopkins University, Baltimore, MD; Lee Kugelmann, Co-Lead, Carrier Program, Barth Syndrome Foundation

Study update: How do women adapt to being a Barth syndrome carrier?
Rebecca L. McClellan, MGC, CGC — Kennedy Krieger Institute, Baltimore, MD; Cynthia James, ScM, PhD — Johns Hopkins University, Baltimore, MD

What we have learned, where to go from here, and how you can get involved?
Lee Kugelmann, Co-Lead, Carrier Program, Barth Syndrome Foundation

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