I'd recommend reaching out to experts involved in the CureGN study, which includes a wide network of nephrologists with direct experience treating patients with C3G and IC-MPGN. Some centers, like the Mayo Clinic (Dr. Richard F. Glassock has historically published on this), Columbia University, and the University of Utah, have active research programs on complement-mediated kidney diseases. Also worth connecting with members of the Glomerular Disease Study & Trial Consortium (GlomCon), which brings together clinicians and pathologists with deep expertise in rare glomerular disorders and evolving biomarkers. Many are involved in clinical trials of C3 inhibitors and transplant outcomes for these diseases, and they frequently contribute to patient education and advocacy efforts. If you need help refining clinical angles--like disease recurrence post-transplant or patient monitoring protocols--those networks are incredibly collaborative and research-driven.
As a nephrologist who treats patients with C3 Glomerulopathy and Immune Complex Membranoproliferative Glomerulonephritis, I often see how complex these conditions can be for both patients and clinicians. C3G and IC-MPGN are rare but serious kidney diseases that require careful monitoring of kidney function, blood pressure, and proteinuria. Early diagnosis and management are critical to slowing disease progression. For patients with advanced disease, kidney transplant may be considered, but these patients remain at risk of recurrence in the transplanted kidney. Close coordination with transplant teams is essential, and ongoing monitoring of complement activity and biomarkers can help guide therapy and anticipate complications. Hypertension is common in these patients and must be aggressively managed to protect kidney function. New therapies, including C3 inhibitors, are promising and may offer more targeted treatment options in the future, though clinical experience is still growing. Overall, management requires a multidisciplinary approach and individualized care plans tailored to each patient's disease activity and comorbidities.