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Join us each month to listen and learn from the experts – people living with rare conditions. We’ll discuss the challenges and triumphs of life with a rare genetic condition and hear from scientists working to develop new medicines. Honest conversations with the rare community, led by the patient advocacy team at BridgeBio. Subscribe below to catch each episode as it goes live.
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Thursday Sep 01, 2022
Thursday Sep 01, 2022
In this month’s episode of On Rare, David Rintell speaks with Cliff and Noreen, the parents of Dylan, a playful, adopted, 15-year-old living with Canavan disease. It’s a heartwarming, funny and poignant conversation about Dylan’s life, the challenges of providing constant care for a severely disabled child and the joy he brings them. As parents of a child with an ultra-rare, fatal genetic condition, Cliff and Noreen live day by day. As Cliff explains, “We focus on what we have now with Dylan and the good times.”
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