Episode description
Episode description
Kaveh is joined by John and Zoe, from the band Portugal The Man to discuss their daughter's rare neurodegenerative disorder and they're joined by Dr. Stan Crooke, who's started the n-Lorem foundation to help find treatments for ultra rare genetic diseases just like this. Take a listen to hear about the struggles of navigating health care for patients and families and the exciting new world of treatments opening up with ASOs (Anti-Sense Oligonucleotides).
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