The Orphan Access Initiative combines human expertise with AI to understand why promising treatments don't reach the patients who need them. Research remains at our core. OAI Nexus turns that research into accessible intelligence.
We advance rare disease access through research, AI, clinical intelligence, and healthcare economics, while keeping people at the center.
Why do promising treatments fail to reach the patients who need them? A treatment gets approved, the science works, and patients still can't get it. This question sits at the center of everything OAI does. We started because we kept seeing the same pattern, and the reasons are rarely simple.
Our research draws on real experiences from patients, caregivers, clinicians, and the industry professionals who shape what treatments get developed, approved, and covered. Technology amplifies that work. It never replaces the human judgment at its foundation.
Disease biology, therapeutic development, clinical trial design, and the scientific obstacles that slow progress from the lab to the patient.
Drug economics, pricing decisions, reimbursement systems, payer behavior, and the commercial realities that determine who gains access.
Most research looks at these sides separately. We think the interesting questions live at the intersection. That is where we focus.
One platform, three specialized intelligence systems. Nexus makes the knowledge buried across literature, trials, economics, and lived patient experience searchable, connected, and usable by the people who need it.
A warm, human entry point into rare disease knowledge. Patient Nexus helps families understand a diagnosis, navigate the path to treatment, and find the questions worth asking, in language built for people, not specialists.
Launch Patient Nexus →A scientific research surface for clinicians and researchers. Clinical Nexus connects disease biology, trial design, and the genetics literature, surfacing evidence and structure across thousands of ultra-rare conditions.
Launch Clinical Nexus →The biotech and finance layer. Nexus Diligence maps drug development, market strategy, and the economics of access, built for the investors and operators whose decisions shape which treatments ever reach patients.
Launch Nexus Diligence →Research remains at our core. OAI Nexus is how that research reaches further, connecting patients, clinicians, and the people who fund and build treatments across one shared intelligence layer.
Explore the platform →Each Access Report traces a single rare disease from scientific discovery through to patient access, examining clinical, regulatory, commercial, and policy dimensions in full. Nexus builds on this foundation.
Access Barriers in the World's Rarest Disease: FOP and the Road to Treatment
From Discovery to $2.1M: The Economics of SMA Treatment Access
Topic currently in development. Follow OAI on LinkedIn for updates on upcoming research and disease selections.
We talk with patients, caregivers, physicians, researchers, biotech leaders, and investors about what it actually takes to get a rare disease treatment from development to the patient who needs it.
Rare Disease Researcher
We talk with Dr. Campbell about rare disease research, access, and the barriers patients face in getting treatment, drawing on her experience researching MED13L syndrome and other ultra-rare conditions.
We are always looking for people willing to share their perspective on rare disease access. If you are a patient, caregiver, clinician, researcher, or industry professional, we would love to talk.
Get in Touch →OAI was founded by two students who believe that understanding rare disease access requires both scientific fluency and systems thinking.
Aarush Shah is a student entrepreneur and funded futures trader passionate about bridging finance and healthcare to solve systemic challenges in rare disease access. He co-founded the Orphan Access Initiative, a student-led think tank addressing financial, clinical, and policy barriers to treatment for ultra-rare diseases. At the Initiative, Aarush leads the financial and access track, modeling R&D costs, reimbursement constraints, and innovative funding solutions to unlock patient access.
He is the founder of ShahTrades, a platform publishing biotech and equity case studies with over 1 million views, and serves as CEO and Head of Healthcare Equity Research at Advanced Equities. He is also the author of "Why Rare Cancers Are Financial Orphans," published in the Curieux Academic Journal and shared by MD Anderson oncologists.
LinkedIn →Veer Chandwani is a student researcher focused on understanding the clinical and structural barriers that limit treatment access in ultra-rare diseases. As Co-Founder of the Orphan Access Initiative, he leads the clinical research track, analyzing disease biology, trial design constraints, regulatory challenges, and patient impact. His work centers on identifying where clinical development becomes constrained and how those limitations interact with broader healthcare systems.
Veer is particularly interested in bridging scientific understanding with real-world implementation, moving beyond textbook knowledge to examine how therapies progress from lab to patient. Through physician interviews, literature review, and trial analysis, he contributes clinical insight that informs system-level solutions to improve rare disease access.
OAI was founded by students and operates with the rigor, curiosity, and independence that serious academic research demands.
Our research is not funded by industry, payers, or advocacy organizations. We follow evidence, not interests.
All Access Reports, educational content, and interview transcripts are freely available to the rare disease community.