Background

From the 1940s through today, the way we treat end-stage kidney disease has remained the same: dialysis and transplant. However, over the last five years, clinical trials and upstream treatments targeting some of the most complex and elusive rare kidney disease have surged tenfold. Multiple C3G and IC-MPGN therapies are in late-stage pipeline or under consideration for approval by the U.S. Food & Drug Administration (FDA) and European Medicines Agency (EMA). These therapies could significantly reduce the burden of illness, modify disease progression, and prevent the need for dialysis and transplant. However, treatments are at risk of not reaching patients due to complex diagnosis, lack of specialists, and regulatory hurdles.

The Event

This invitation-only summit will proactively convene stakeholders to explore the current clinical landscape, define the most urgent challenges, and recommend actionable steps that will help ensure and accelerate access to treatment and continued drug development progress.

Attendees are expected to include 50 to 75 clinicians, pathologists, researchers, professional societies, patient advocacy organization representatives, biopharmaceutical drug developers, and government researchers and regulators.

Expected Outcomes

Summit outputs being explored include a consensus publication and the formation of working groups in key areas of impact such as diagnosis protocol, access to expert care, access to approved therapies, and regulatory barriers.

SEISMIC was made possible thanks in part to generous support from an anonymous donor, Apellis Pharmaceuticals, Novartis and Sobi. Sponsorship does not influence program content or project outcomes.