The Invisible
Investors
Patient foundations pay for some of the riskiest science in medicine. They are rarely credited and almost never repaid. Rowan Dias built the case for why that should change.
Why this matters to us
The MED13L Foundation sits where most rare disease foundations sit, at the very start of the drug pipeline. We fund the early work that larger investors will not touch yet, because the science is unproven and the patient population is small. For MED13L that means roughly 400 confirmed diagnoses worldwide, almost certainly an undercount.
Since 2019 we have put more than $1.5 million into research across basic science, therapeutics, and natural history.
Rowan’s research puts a name to this role. It traces how patient foundations finance discovery, then asks a plain question. When those early bets turn into approved therapies, who actually collects the return?
The argument, in three parts
A short read of the work behind the poster.
Foundations take the first risk
Discovery and early studies are where most drug programs fail and where money is hardest to raise. Patient foundations step in at exactly this stage, often as the only funder willing to write the check.
The return flows past them
When a therapy succeeds, the financial upside is captured downstream by pharmaceutical companies and their investors. Rowan frames this as a value capture failure, not a market failure. The value is real. It just does not flow back to the funders who made the early science possible.
A working model already exists
The Cystic Fibrosis Foundation held royalties on the CFTR drugs Vertex developed, then sold those interests to Royalty Pharma for more than $3.3 billion, money that now funds further CF research. It proves a foundation can hold a real financial stake in what it funds. The open question Rowan raises is whether the model holds at ultra-rare scale, where the patient population can be a hundred times smaller.
The researcher
Rowan Dias
Rowan Dias is a volunteer, fundraiser, and research affiliate of the MED13L Foundation. His work connects rare disease advocacy with the economics of how medicines actually get funded. He presented The Invisible Investors at WODC 2026 in Boston.
