MedTalk November 2025 – Every Voice Matters: Jamie Tierney on Duchenne Muscular Dystrophy Advocacy
Автор: Kathrin Kunze
Загружено: 2025-11-28
Просмотров: 14
Описание:
In this MedTalk, Jamie Tierney shares his family’s journey after his son was diagnosed with Duchenne Muscular Dystrophy (DMD) at age three. Jamie describes the emotional impact of the diagnosis, the obstacles faced in accessing clinical trials, and the creation of DMD Access and Innovation to support other families.
Joining him in conversation:
Keith Berelowitz, on the importance of patient advocacy and tools like the one from #PrXEngage to reduce anxiety in rare disease families.
Eva Nyblom, nurse anesthetist, discussing systemic healthcare challenges and the potential for AI to improve diagnostics.
This session highlights the critical need for awareness, personal storytelling, and innovative solutions to help families navigate rare diseases with clarity, support, and hope.
🔗 Connect with Jamie’s work and community:
Facebook: Wee Jamie’s Journey – https://www.facebook.com/weejamiesjourney
Newsletter: Every Voice Matters – https://r.list.prxemail.com/ag7c3vhqpxpfe....
pRxEngage: https://app.prxengage.com/
#MedTalks #RareDisease #PatientAdvocacy #DuchenneMuscularDystrophy #HealthcareInnovation #AIinHealthcare #FamilySupport #EveryVoiceMatters
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