A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
ONCE UPON A GENE - EPISODE 214
A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari
Anne Rugari is an advocating powerhouse, an author of two children's books, a mom, and two of her children have passed away from Krabbe disease. She joins us to share her personal story and also share her knowledge about tissue and organ donation.
EPISODE HIGHLIGHTS
Can you share how you became part of the rare disease world?
In 1986, my second child Nick received a diagnosis of Krabbe disease, or globoid cell leukodystrophy, a terminal disease that took him just…
The skinny
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