Why I’m Using AI to Build the Treatments that Rare Disease Families Deserve

Founder’s Story

I didn't set out to build a company. I set out to save my sight and help my sister save hers.

I was seventeen when a doctor told me I had a rare retinal disease that causes progressive blindness. A few years later, my younger sister sat in the same kind of room, hearing the same diagnosis. We were both told: "There's nothing to do. Go home, learn braille, train with a white cane. Accept your life with vision loss."

I wasn't willing to accept "no options." I started reading papers and chasing down experts, looking for anything that might change our fate. I dreamed of the moment somebody I had met called me and said "we have a clinical trial for you." After a decade of pursuing every possible existing option, the reality that no "magical phone call" set in. There's no financial incentive for traditional pharma to develop a treatment for the 18 diagnosed patients in the US with our disorder. But along the way, I discovered something crucial: technologies like CRISPR were already working for other diseases, and those diseases had the same genetic characteristics as ours. The science existed - it just wasn't being applied to my family's condition. That realization changed everything. I took matters into my own hands and started a 501(c)3 to develop a novel gene therapy. The premise was simple: the science is here, but without traditional pharma's interest, families like ours have to fund development of a treatment ourselves.

Diving into the world of drug development, I learned firsthand how complicated it is to make a treatment, especially one meant for a small number of patients. The hardest part was reconciling differing opinions of many smart people who gave me different advice. Specialists who each held one puzzle piece never saw the whole picture and didn't provide next steps. Even when I got consensus on what to do, execution proved nearly impossible - labs and manufacturers are built for large pharma contracts, not individual patients seeking help. No infrastructure existed to move a therapy from "we could make this" to "here's your dose." While I knew treating my disease was scientifically possible, it was systemically impossible.

This isn't just my problem. 300 million people live with rare diseases - that's almost 6% of humanity and more than 6 times the population living with cancer. Half are kids. 95% of those diagnosed have zero treatment options. These families are stuck where I was stuck, hearing the same "nothing we can do."

That's why I started Nome. We are building the Operating System for Personalized Therapeutics™ to solve what I learned firsthand: the real bottleneck to personalizing medicine is operational complexity.

Just like an operating system coordinates all the complex pieces of your computer so things simply work when you click, we're building the system that automatically connects all the fragmented players in personalized medicine - geneticists, research labs, manufacturers, regulators, and providers. AI makes this possible in ways that weren't feasible even two years ago: our system analyzes dozens of scientific papers and databases on a genetic mutation in minutes instead of months. LLM agents know which of 50+ contract manufacturers can produce a specific therapy, their lead times, and how to structure contracts - eliminating months of process time for those who cannot afford it.

Our mission is to bring personalized treatment to every patient, which means driving down costs dramatically while maintaining quality. This is a scaling problem that only software can solve. Personalized medicine is infinitely more complex than traditional drug development - every therapy starts with a unique patient and their specific mutation, every patient needs different research steps to move forward, different manufacturers, different logistics, and different endpoints to monitor safety and efficacy. Handling this complexity manually for thousands of patients simultaneously is impossible. But AI can manage all of these variables at once, and learn from each case to optimize the next. As our system orchestrates more therapies, it gets smarter about which approaches are best for each patient, which manufacturers are reliable, where delays happen - making each subsequent treatment faster and cheaper. More therapies make the software smarter, which makes therapies cheaper, which enables more therapies. Once we cut costs in half, personalized therapeutics become economically viable for healthcare payors, and that's when they shift from experimental to standard of care. It's the only path to making personalized medicine routine instead of rare.

This isn't theoretical. One of our first patients is twelve years old. She's losing her hearing and her sight to a degenerative disease. Her family spent years collecting conflicting opinions, chasing leads that went nowhere, hitting dead ends. Our system pulled her whole story together, mapped real options, matched the right partners, and laid out clear next steps. Now she has a treatment plan and a timeline. There's finally hope.

We exist to spread this hope to every family told they had no options. Nome is building a world where every patient has a treatment for their disease, no matter how rare the disorder. If you are somebody who was told "there's nothing we can do" like I was, or a clinician who wants to help the patient in front of them, Nome is here to present a different way forward. Share your diagnosis with us on our website. We'll send you a free report - built by AI, validated by PhDs - scoring whether a personalized therapy is possible and what the next steps are. Let's figure out what's possible together, starting now.


  • Patient-Founded, Patient-Focused

    Founded by a rare disease patient, Nome’s team personally understands both the urgency families face and the innovation needed to solve the custom drug development challenge.

  • Experts United by Purpose

    Nome is a team of specialists in AI, genetics, rare diseases, and drug development who share one belief: no one should ever be told, “there’s nothing we can do.”

  • Raising the Standard

    Treatments for rare disease should be the expectation—not the exception.

  • A Mission That Won’t Stop

    We are determined to ensure every patient, no matter how rare their disease, has a path to treatment. Our work is not done until personalized therapies are the standard of care.

About Our Company

Nome is rewriting the rules of medicine to ensure every patient can access treatment.

We bring together proven science, artificial intelligence, and world-class experts to make it simple to develop personalized treatments for rare diseases that traditional pharmaceutical companies have left behind.

Our story starts with a simple truth: life-saving science exists but the drug development system is broken, leaving rare disease families without options.

We see a different way. In the past decade, dozens of personalized therapies have been developed by leading clinicians, families and nonprofits, proving that a new approach to treating rare disease is possible. However, this process is difficult, expensive, and slow - mainly because of operational and funding barriers rather than scientific limitations. Nome believes that the rare disease community deserves a reliable and efficient way to access potentially life-saving treatments.

Nome is building the Operating System for Personalized Therapeutics™ to solve this problem. Using automation and AI paired with our team’s deep expertise, we simplify the development of customized medicines, accelerating timelines while maintaining quality. This process starts with our technology analyzing the genetic cause of your disease to determine if a personalized therapy might be appropriate. Based on these results, the Nome team develops a detailed action plan and coordinates every step of the journey towards creating a custom therapy. We handle the complexity so families can focus on what matters most: caring for their loved ones.

Why are we called Nome?

In 1925, there was a deadly diphtheria outbreak in Nome, Alaska. Hundreds of children became critically ill. A treatment existed to save them, but delivering it to the remote fishing town by conventional methods was impossible. Determined to save the children, teams of sled dogs traversed 674 miles through a blizzard, arriving in Nome in time to save the children.

100 years later, we face a similar situation for millions of patients living with rare diseases without existing therapies. Scientists have developed increasingly proven therapeutic platforms, making it possible to build patient-specific treatments. However this approach is not economically attractive to conventional pharma, so these treatments never get made. Reaching these patients requires a new way of thinking about how drug development should be orchestrated.

This is what Nome is about and who it is for - just like in 1925, we know proven science that can make a meaningful impact for sick patients exists, and we are determined to innovate a new way to bring these medicines to families in need. Let’s get to Nome.

Take the First Step

Your journey to potential treatments starts today.

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