Together, 20 patient organizations raise their voices for hope — better diagnosis, treatment, and research for rare genetic kidney diseases on RARE DISEASE DAY 2026
Across communities and countries, 20 patient organizations have come together with one shared purpose: to change the future for people living with rare and genetic kidney disease.
Behind every delayed diagnosis, every unanswered question, and every limited treatment option, there is a person, a family, and a life waiting for better solutions. United, these organizations are raising their voices to accelerate early and accurate diagnosis, expand access to effective and equitable care, and strengthen research that can truly transform patients’ lives.
They call on healthcare professionals, researchers, policymakers, and industry partners to work hand in hand with the patient community. From improving awareness and clinical pathways to supporting data collection, innovation, and patient-centred research, collaboration is essential to move faster and reach those who are still invisible to the healthcare system.
This collective call is about more than awareness.
It is about hope, solidarity, and action — so that no one living with a rare and genetic kidney disease is left behind.
