About 1200 Alport patients are registered in the Alport cohort in the UK’s really impressive Rare Renal Disease Registry (RaDaR). This event (22 May 2025) was an occasion in London to meet with other rare disease groups, and celebrate the tremendous resource that RaDaR has become.
We hope for a significant publication from the Alport data in RaDaR during 2026. Some was included in the high-profile publication Lancet publication from RaDaR last December (see Supplementary Data for details of the Alport outcomes). The paper showed that rare diseases don’t obey the ‘rules’ for all-comer kidney diseases. They tend to occur in younger people, and to progress more rapidly than other conditions. Highlighting the need to invest in serious research to improve treatments.