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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