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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
Innehåll tillhandahållet av Tony Martignetti. Allt poddinnehåll inklusive avsnitt, grafik och podcastbeskrivningar laddas upp och tillhandahålls direkt av Tony Martignetti eller deras podcastplattformspartner. Om du tror att någon använder ditt upphovsrättsskyddade verk utan din tillåtelse kan du följa processen som beskrivs här https://sv.player.fm/legal.
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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