Stacey Lihn

In

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Stacey Lihn

About Me

In December of 2009, Stacey’s unborn daughter was diagnosed with a rare and often fatal congenital heart defect – Hypoplastic Left Heart Syndrome (HLHS). From the day of her diagnosis, she gained insight regarding the importance of learning networks and patient advocacy. In 2010, Stacey co-founded Sisters by Heart, a national non-profit supporting the single ventricle community. As parent lead of the National Pediatric Cardiology Quality Improvement Collaborative, she’s seen the tremendous role parents and patients play in partnering with clinicians, providing meaningful information and insights in improving care and outcomes for chronically ill children. Stacey currently serves on the American Board of Pediatrics Foundation. For the past few years, she’s provided first-hand experiences as a patient advocate while networking with practitioners, legislators, and policy makers, most notably speaking at the 2012 Democratic National Convention in support of the Affordable Care Act.

Title: Co-founder

Company/Affiliation: Sister by Heart

Twitter: @sllihn

Website: http://www.sistersbyheart.org

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