Project Baby Lion
Rapid Precision Medicine for Ultra-rare Infants
Advancing the ultra-rare landscape with emerging technology.
Accelerating Ultra-rare Solutions
For a family with an ultra-rare infant, every moment matters. Every day without accurate diagnosis and appropriate treatment means life-altering consequences for a baby with a neurodegenerative or neurodevelopmental disease.
Project Baby Lion is our data-backed plan to create scalable solutions, from rapid NICU diagnosis to personalized therapeutics development, to personalized trials and beyond — to realize a vibrant life for ultra-rare kids and their families.
Precision personalized medicine is the future. We’re starting with the people who need it most — and need it urgently. With Leo’s story as proof of concept and the early backing of domain experts, we’re on our way there.
Our Methodology
Beyond Diagnosis
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Our model provides immediate action and real guidance for caregivers caring for an ultra-rare child. Leading-edge treatment plans and a standard post-diagnosis path (along with a global community of support) will offer comfort and direction to families.
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Machine Learning & AI
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When it comes to generating actionable insights from data, from analyzing large -omics datasets to producing customized precision therapeutics, machine learning has driven once unfathomable scientific breakthroughs. We and our partner organizations use AI/ML principles and tools to scale the effort in diagnosing and treating the multitudes of ultra-rare diseases.
Data Technology
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Caregivers have the best access to real-life data about their child’s health. We will invest in “on the ground” data collection methods, thereby getting more accurate and higher resolution clinical data while lessening the burden on patients and caregivers.
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Curating and tracking high quality ultra-rare data will unlock the potential of the AI/ML revolution for ultra-rare.
Goals and Impact of Project Baby Lion
1
Define the post-diagnosis roadmap
Fundamentally transforming the lives of those caring for ultra-rare patients is at the heart of our mission. We aim to make rapid postnatal diagnosis in the NICU the standard, then to follow-up with actionable, science-backed guidance that provides hope for the journey ahead.
2
Center families and patients as change-makers
Patients and caregivers drive powerful regulatory and systemic change through advocacy and scientific initiatives. They know their needs best. Only when people living the ultra-rare experience have a significant seat at the table can change be meaningful and impactful for real life.
3
Shift the risk-benefit needle toward urgent action
As we gather more data, clinicians can make braver, better-informed decisions about how to best serve the children who need urgent personalized care. We’re keenly aware of the brutal realities of ultra-rare, from economics to ethics. By advancing our understanding of the biology of ultra-rare, doctors have more options than the default “standard of care” that fails treatable ultra-rare patients.
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Build with equity as our foundation
We’re working to make high-quality healthcare available and accessible for all. Expanding access and effective utilization is our goal, not increasing profits. By collaborating with public, wide-reaching institutions based on equity and merit, we’re leveraging technology to deliver scalable ultra-rare medicine at lower costs, to ensure more children get treated.
5
Evolve standard of care to support everyone
A more direct bench-to-bedside connection is essential for medical advancement, especially as technology enabled personalized medicine becomes standard. By better integrating biomedical research infrastructure with patient-facing healthcare delivery, we can raise the bar for what “standard of care” means for people living with rare and ultra-rare diseases.
Meet Our Partners
Project Baby Lion is backed by industry experts who are making ground-breaking biomedical progress and humanitarian impact.
