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サマリー
あらすじ・解説
🎙️ Hosts: Erin Hubbard, Laurel Gregier, and Lorena Lomelin
📅 Release Date:2/28/2025
🔬 Topic: Story Behind the Lost Enzyme Project
Episode Overview
In this inaugural episode of These Kids Can’t Wait, we are joined by the co-founders of The Lost Enzyme Project—Erin Hubbard, Laurel Gregier, and Lorena Lomelin. As parents of children affected by ultra-rare lysosomal storage disorders, they share their deeply personal experiences, the challenges of advocating for research in rare diseases, and the motivation behind launching this initiative.
This discussion highlights the urgent need for scientific progress, the barriers to treatment development, and the power of patient-led advocacy in accelerating change.
Key Takeaways
✔️ The personal journeys that led to the creation of The Lost Enzyme Project
✔️ The organization’s mission to drive research and innovation for rare diseases
✔️ Challenges in the rare disease space, including funding gaps and limited awareness
✔️ The importance of collaboration between families, researchers, and biotech leaders
Resources & Links
🌐 Learn more: https://thelostenzymeproject.org/
📢 Follow us on social media: https://www.linkedin.com/feed/ https://www.instagram.com/thelostenzymeproject/ https://www.facebook.com/people/The-Lost-Enzyme-Project/61551541563692/
📩 Contact us: Email us at admin@thelostenzymeproject.org to get in contact with our producer at alex@thelostenzymeproject.org
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