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Precision Medicine for Rare Diseases: Julia Vitarello’s Fight for Change_e.061
Manage episode 453697671 series 3006114
John Flavin에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 John Flavin 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.
This episode of Lab Rats to Unicorns features an inspiring conversation with Julia Vitarello, founder of Mila’s Miracle Foundation and a trailblazer in the field of individualized genetic therapies. Julia shares the story of her daughter Mila, who was diagnosed with a rare and fatal genetic disease, Batten disease, at age six. Confronted with a system ill-equipped to handle ultra-rare conditions, Julia embarked on a transformative journey to develop Milasen, the first-ever genetic therapy tailored for a single individual.
Through resilience and collaboration, Julia mobilized a global network of scientists, regulators, and supporters to create a treatment that set a precedent for a new approach in medicine. Beyond her daughter’s story, Julia reflects on the systemic barriers families face when accessing life-saving treatments and how her foundation is addressing these challenges. She explores the future of healthcare, advocating for changes to regulatory and reimbursement models to scale access to innovative therapies for rare disease communities. Julia’s pioneering work is a testament to the power of advocacy, science, and the unwavering determination of a mother to spark a revolution in medicine.
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