CODA was founded by patient leader Fidji Simo to drive research forward and bring answers to patients, faster.
The Next Chapter: CODA—Where Patients Lead, and Progress Follows
I learned fast with Grace: patients with complex disorders were stuck in a system that wasn’t built for them. They lacked a research network that could connect the dots, move faster, and deliver answers for conditions with no clear explanation and overlapping symptoms. That’s why CODA exists.
CODA was born because a bold, determined patient leader—Fidji Simo—refused to accept the status quo.
Fidji is a powerhouse CEO, leading one of the world’s most innovative companies. She’s steered teams through massive challenges. But behind the scenes, she’s been fighting her own: POTS, endometriosis, and more. She knows what it feels like to watch life get harder because your body won’t cooperate. She knows the fear of a system that can’t give you answers. And when she became a mom, that fear sharpened: What if her daughter faces the same? She’s driven to build a better future—for her child, and for every patient.
As CEO of Instacart, Fidji brings a rare kind of leadership to this fight: the ability to think at scale, to innovate with speed, to unite talent and technology to solve massive problems. She saw firsthand that patients were losing years to a system that couldn’t keep up. Doctors didn’t have the tools they needed. Flares could steal whole days, weeks, or more. If we wanted change, we’d have to build it ourselves.
Fidji didn’t start from scratch. She studied the patient-led research models that had transformed cancer, ALS, Parkinson’s. She asked biotech and pharma leaders the hard question: “Why aren’t you investing in treatments for these patients?” The answer was always the same: “We don’t have the data.”
So Fidji set out to solve that. She knew we needed more—more data, better tools, stronger networks, faster paths. That’s what CODA is: a patient-driven, technology-powered research system built to accelerate breakthroughs for complex disorders. Read a letter from Fidji about the CODA mission.
In other diseases, patients led a revolution. Now it’s time to bring that same revolution to complex disorders.
I didn’t know it yet, but everything I’d learned in oncology research was about to become deeply personal.
I didn’t know it yet, but everything I’d learned in oncology research was about to get personal.
While Fidji was building a new research system, my daughter Grace was fighting harder than ever. In her early 20s, Grace had battled her way to college—a gift she earned through sheer grit, endless trial-and-error treatments, hospital stays, and doctor visits. But college was a fragile balance. Her months on campus were interrupted by sudden crashes, sending her home for long recoveries. We’d get her stable, and then the symptoms would sneak back. It was a relentless cycle every family in this space knows too well.
And then, fate intervened. Right before Grace got sick, I had shifted from financial services to nonprofit—specifically, oncology research. While she fought for her health, I worked as Senior Advisor to one of the most pioneering leaders in disease research: Kathy Giusti, founder of the Multiple Myeloma Research Foundation, leader of the Kraft Precision Medicine Accelerator, and author of Fatal to Fearless.
Kathy wasn’t just a leader—she was a trailblazing patient. Diagnosed at 38 with a fatal blood cancer and given three years to live, she built the MMRF like a biotech startup and ran it like a Fortune 500 company. Under her leadership, the MMRF transformed cancer research: building the first collaborative tissue bank, sequencing the first cancer genome, launching nearly 100 trials, helping approve over 15 new drugs. Patient lifespan tripled. Research was forever changed.
I had watched it happen up close. I knew this model could work for Grace—and for patients like her.
Then came another twist of fate: I read an article about Fidji’s leadership and vision as a patient for patients. I messaged her on LinkedIn. Would she talk? She already knew Kathy’s work and its impact. We connected immediately, driven by a shared urgency.
We dove deep into what had worked in cancer, Parkinson’s, cystic fibrosis, ALS. Over and over, we came back to the same truth: silos don’t serve patients. Collaboration does.
That’s what we’re building: an ecosystem where scientists, clinicians, technologists, advocates, and patients unite to accelerate research, improve diagnostics, and develop effective treatments for the people who’ve been overlooked for too long.
It’s not just research. It’s an alliance.
CODA: the promise for patients, now.
We’ve taken the lessons learned from those models and applied them to the tools of today—AI, machine learning, advanced multi-omics, and real-world data integration—to move faster and go deeper. These technologies help us identify hidden patterns, stratify patient populations, uncover biomarkers, and accelerate drug repurposing.
The CODA Catalyst is a system designed to deliver actionable insights and tangible outcomes for individuals living with complex disorders. It's a comprehensive approach that moves from suffering to solutions:
Start with the patient.
Grounding everything in lived experience, unmet need, and what success looks like for the people we serve.Collect the right data.
Massive amounts, well-characterized—from patients, biobanks, EHRs, wearables, clinical records, and lived experience—to build a foundation that reflects real-world complexity.Analyze that data deeply.
Using the latest technologies, we uncover biomarkers, decode disease mechanisms, and launch rigorous studies that drive clinical trials, drug repurposing, and real treatments.Engage the best minds in science.
We’re building an alliance of experts—foundations, academic centers, researchers, clinicians, technologists, and patients—all focused on solving complex disorders together. For too long, science has been fragmented. CODA is breaking down silos and uniting the people who can drive real change.Turn insights into action.
New diagnostics. New treatments. A path to cures.
And it’s working.
CODA in Action
In our very short history, here’s what we’ve made happen to date:
Launched MetX, a landmark study at Metrodora Institute that established a patient registry, biorepository, and the core infrastructure needed to support future multi-omics research in complex disorders.
Initiated MELO, a collaborative study with Metrodora Institute and PrecisionLife, combining patient-reported data and genomic analysis to identify risk factors and disease subtypes—laying the groundwork for potential diagnostics and drug targets for ME/CFS and Long COVID.
Published our first preprint, in collaboration with PrecisionLife, using the NIH’s All of Us dataset to successfully reproduce key genetic risk factors for Long COVID across diverse populations.
Conducted a data landscape analysis, which we’ll be sharing soon.
Built new partnerships with leading researchers, clinicians, and foundations focused on solving complex, understudied conditions.
And we’re just getting started.
This Is About All of Us
Grace is my daughter, and she’s my first reason to fight. But now, we have millions more. Fidji is a patient and she knows her daughter needs protection from the future. We both feel a tremendous responsibility to help the millions of patients who need progress.
These are our daughters. Our sons. Our parents. Our friends. People who were healthy—until they weren’t. People who fight every day for answers, for dignity, for a system that sees them.
They deserve more.
CODA is here. But we can’t do this alone.
This is your call to action:
If you’re a patient—join us.
If you’re a family member—stand with us.
If you’re a doctor, scientist, donor, or someone who refuses to accept the status quo—this is your fight, too.
Progress doesn’t happen by accident. It happens when expert, coordinated research meets the relentless resilience of patients.