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The Voice Of The Rare: Building A Community Through Shared Stories With Rebecca Stewart & Nicola Miller
Manage episode 432661664 series 2888348
Sisällön tarjoaa Tony Martignetti. Tony Martignetti tai sen podcast-alustan kumppani lataa ja toimittaa kaiken podcast-sisällön, mukaan lukien jaksot, grafiikat ja podcast-kuvaukset. Jos uskot jonkun käyttävän tekijänoikeudella suojattua teostasi ilman lupaasi, voit seurata tässä https://fi.player.fm/legal kuvattua prosessia.
In this episode, Tony Martignetti talks with sisters Rebecca Stewart and Nicola Miller as they share their transformative journey and the impactful work they have undertaken in the rare disease community, catalyzed by Nicola’s son Edison’s diagnosis with xeroderma pigmentosum. They delve into the challenges of navigating the rare disease landscape, recounting their pivotal roles in founding Action for XP and launching Rare Revolution Magazine. Their story reflects resilience, dedication, and the profound impact of community-driven initiatives in the face of adversity.
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