KidneyFuture at the Rare & Genetic Kidney Disease Summit

KidneyFuture at the Rare & Genetic Kidney Disease Summit

KidneyFuture's Executive Director Vincent Ko spoke at the 6th Annual Rare & Genetic Kidney Disease Drug Development Summit in Boston, held August 18-20, 2026, alongside sponsors and researchers from across the field.

His session took on a practical obstacle to progress in congenital kidney disease: how hard these trials are to run. Drawing on natural history data and external control arms, he made the case that better use of existing patient data can reduce the recruitment burden that has kept CAKUT off most development plans, and that the adult burden of congenital kidney disease is larger than the field has historically recognized.

He was there as the voice of the patient, representing families like yours and pushing for the treatments this community needs. Being on that stage, alongside the companies who decide where research money goes, is exactly the kind of access this work is meant to create.

That conversation continues through the TRACK Consortium, the FDA-engaged partnership KidneyFuture convenes to build the trial infrastructure that congenital kidney disease still lacks.