Episode 28: Sara Brebbia-Dirksen - NF1

 

Sara had never heard of Neurofibromatosis (NF) before her son, August, was diagnosed with NF1. She has now become very knowledgeable about this condition, and she raises her voice to increase awareness of this rare disease. Sara shares how NF1 has rocked their world, between hospital appointments, hormonal treatments and trying to turn a rare disease into something to be proud of for August. With such a progressive disease, their journey is not over, but I am hopeful that patient advocates like Sara are paving the path to a treatment.

The song that Sara chose is Never give up by Sia.

Sara Brebbia Dirksen on LinkedIn

 
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Episode 29: Sabina Kineen - Fabry Disease

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Episode 27: MarlaJan Wexler - Lupus