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Patient stories

Goldenhar syndrome Patient Stories

Patient story

Goldenhar Syndrome: Emily’s Story

Born with tetralogy of Fallot and Goldenhar syndrome, Emily has endured dozens of surgeries in the past 14 years, and her mission is to teach kindness and acceptance.

Patient story

Goldenhar Syndrome & Von Willebrand Syndrome: Aidan's Story

Aidan was born with Goldenhar syndrome and Von Willebrand syndrome, two rare genetic conditions that need expert medical management. He receives care from The Children's Hospital of Philadelphia at CHOP Specialty Care Centers in New Jersey.

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