Tag: rare disease advocacy

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Ep. 5 – Wild West of 3 Dimensions – How 3D Printing is Changing the World of Pediatric Medicine.

A complex open heart surgery is an undertaking full of inherent risks, during which many things hang in the balance. But, what if some of that unforeseen risk could be mitigated?  What if the surgeon could hold your heart in their hands, study every detail, visualize every structure, even practice their operation on your heart […]

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Ep. 3 – Kabuki Syndrome – “I Sing The Body Eclectic”

Kabuki syndrome is a very rare and unique genetic condition whose wide-ranging effects can touch almost every organ system in an affected person’s body. Remarkably, it shows up differently in every person, and the ramifications can spin seemingly endless and often mysterious medical challenges for individuals and their families. On this episode of One Rare […]

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