This episode of ByteSight features Faizan S. Mohammad, founder and CEO of Leg&airy, a startup developing smart orthotics and prosthetics for children with neuro-orthopedic and rare disease conditions. Faizan’s path into healthcare was deeply personal: after his young son developed severe symptoms from an undiagnosed condition, he redirected his career from technology consulting toward building solutions for the patients that mainstream medicine consistently overlooks.
In this conversation, Manasi and Faizan ask a deceptively simple question: are rare diseases actually rare? And what does the answer mean for how we research, fund, and regulate them?
About Faizan S. Mohammad
Faizan is a technology entrepreneur and healthcare innovator with a background spanning physics, computer science, and business and management consulting across pharma, insurance, and financial services. Following his son’s diagnosis with a severe neuro-orthopedic condition, he founded Leg&airy, a company building autonomously fitted, technology-driven orthopedic devices for children and adults with rare and complex conditions. He holds Executive MBAs from the University of Zurich and Stanford University, and works at the intersection of medical devices, robotics, and patient-centered innovation.
The Problem Isn’t Rarity, Rather Understanding
Faizan opens with a provocation: with an estimated 300 million people globally living with a rare condition, do we actually know enough about the true scale of the problem to call these diseases rare?
His view is that the label itself is part of the issue. These conditions are not under-researched because few people have them; they are under-researched because they are not fully understood, and they are not fully understood because the data has never been collected.
As Faizan puts it:
„I think the reason for that is they’re just not fully understood, those diseases. That’s why there’s a lack of treatment for those.”
The current medical system compounds the problem with economic reality. Clinical trials are expensive. Regulatory pathways are designed for large patient populations. And for a condition affecting a small, fragmented cohort, there is often simply no commercial case to pursue it, regardless of how much suffering is involved.
„It costs so much to do a disease trial today in the current systems that it’s just not economically viable to look into those rare diseases. As sad as it may sound.”
Translation: The Missing Link
When asked why diagnosis and treatment remain so elusive even as technology advances, Faizan’s answer is one word: translation.
The tools exist. Individualized medicine is technically conceivable. Delivery mechanisms into the bloodstream, organs, and even the nervous system are no longer science fiction. But research is not reaching patients, and the bottleneck is the pathway between discovery and clinical use.
Rather than leading with AI as the answer, Faizan is more measured. He argues that before any intelligent system can help, the foundational infrastructure must exist: centralized databases, dedicated research positions, funded clinical pathways, and regulatory frameworks that acknowledge the unique constraints of rare disease populations. You cannot run a double-blind trial when you don’t have enough patients to fill it.
„I think there needs to be a way to do basic research on those so-called rare diseases… create venues for researchers, positions, clinics, hospitals, universities… to find pathways for their research to get into translation.”
The Regulatory Barrier and Who It Actually Protects
Both speakers converge on a frustration that runs through the entire conversation: regulatory systems were not designed with rare disease patients in mind.
Manasi’s point is direct. Regulations are written by healthy people, for healthy people. For a patient who may not live to see the end of a standard approval timeline, multi-year trial protocols are not safeguards; they are obstacles. Patients are frequently willing to contribute data, accept risk, and move fast. The system is not.
Faizan calls for a distinct regulatory pathway for rare diseases, one that remains ethical but removes barriers that are structurally incompatible with small patient populations and urgent timelines.
„Maybe regulators need to listen up and figure out a more friendly regulatory pathway for the rare disease ecosystem. Maybe that will help bring more ideas into clinical use.”
Final Takeaway
Rare diseases are not a niche issue. They are a signal that medicine has been built on a fraction of the human population and that the remaining foundation is still largely unexplored.
What is needed is not a single breakthrough but a movement: compiled effort, systemic investment, and someone willing to pick up the baton. This episode is an invitation to that conversation.
