1 Orphanet (2024). C3 glomerulopathy. Available at: https://www.orpha.net/en/disease/detail/329918
2 Teasdale, E. J., Leydon, G. M., Fraser, S. K., Roderick, P. J., Taal, M. W., & Tonkin‑Crine, S. (2017). Patients’ experiences after CKD diagnosis: A meta‑ethnographic study and systematic review. American Journal of Kidney Diseases, 70(5), 656–669. https://doi.org/10.1053/j.ajkd.2017.05.019
3 Bomback, A. S., Charu, V., & Fakhouri, F. (2024). Challenges in the diagnosis and management of immune complex-mediated membranoproliferative glomerulonephritis and complement 3 glomerulopathy. Kidney International Reports, 10(1), 17–28. https://doi.org/10.1016/j.ekir.2024.09.017
4 Kidney Care UK – Rare Conditions (2023). Available at: https://kidneycareuk.org/rare-kidney-conditions/rare-conditions/
5 American Kidney Fund - Signs and symptoms of kidney disease (2025). Available at: https://www.kidneyfund.org/all-about-kidneys/signs-and-symptoms-kidney-disease
6 Hogan J.J., Mocanu M., Berns J.S. (2016). The Native Kidney Biopsy: Update and Evidence for Best Practice. Clin J Am Soc Nephrol.;11(2):354-362. doi:10.2215/CJN.07480715.
7 ERKNet - C3G and IC-MPGN (2025). Available at: www.erknet.org/patients/your[1]kidney-disease/c3g-ic-mpgn/disease-info
8 Kidney Research UK - Rare and hereditary kidney diseases (2025). Available at: https://www.kidneyresearchuk.org/conditions-symptoms/rare-and-hereditary-kidney-diseases
Navigating diagnosis with a rare kidney disease, like C3G or primary IC-MPGN
Receiving a diagnosis of a rare kidney disease, such as C3 Glomerulopathy (C3G) or primary (idiopathic) Immune Complex-Mediated Membranoproliferative Glomerulonephritis (IC-MPGN), can bring many questions and uncertainties.1 Before, during and after diagnosis, you may face an unfamiliar medical condition, including new terminology and unanswered questions.2 But you’re not alone - help, information and support are available every step of the way.
Early signs and diagnosis
About 1 to 3 new cases of C3G are diagnosed each year for every one million people worldwide, and for primary IC-MPGN there is still not enough data to know its global incidence.3 These conditions can be difficult to diagnose.4 Early signs of kidney disease may include fatigue, swelling in the legs or feet, high blood pressure and changes in urine content and volume.5
Standard tests like urine and blood analyses can suggest kidney problems but are not enough for a clear diagnosis. A kidney biopsy is the only reliable way to confirm C3G or primary IC-MPGN.6 Having this clarity ensures your doctors can tailor the right care plan to you or your loved one.
We spoke with Yanick and Enrique about their experiences with the diagnostic process.
Yanick, from Canada, has a daughter who was diagnosed with a form of C3G in 2023. Speaking on their experience with the diagnosis process, he said:
“It was a lengthy one, seeing different departments from nephrology to rheumatology. We also had to do a biopsy on her, that they had to study. So, it took about 16 months to get a full, proper diagnosis.”
Enrique, from Colombia, is the father of a son living with the same kidney disease. Although the family experienced anxiety at the time of diagnosis, they have found strength through the support of friends, family and patient groups.´
Enrique explained:
"At first [upon diagnosis], I was devastated, until I realised that getting an early diagnosis and having parents willing to do whatever it takes, was the right thing for my son. Dealing with the anxiety of the unknown and the loneliness [is the biggest challenge].”
Offering advice to others in a similar situation, Enrique added:
“My advice would be to choose the right nephrologist for you or your loved one, seek out support groups and understand how everyday situations affect the kidneys. I have a spreadsheet where I record everything, and I make a relationship between the labs and his daily life.”
Proteinuria
Excess protein in the urine, often causing foamy or frothy urine.
Swelling (oedema)
Fluid retention, particularly in the legs, ankles, hands, and around the eyes.
Hypertension (high blood pressure)
A common symptom that can worsen kidney damage over time.
Haematuria (blood in the urine)
Urine may appear pink, red, or brown, or microscopic blood may be detected during testing.
Fatigue and weakness
Caused by the build-up of waste products in the blood and sometimes worsened by anaemia.
Decreased kidney function
Often identified through blood tests, such as elevated creatinine levels, and can progress to kidney failure in severe cases.
Managing your condition
It’s important to remember that many rare kidney diseases, including C3G and primary IC-MPGN, are manageable. While the diagnostic process may include several steps, it is often the crucial starting point toward managing the condition and finding an approach that suits you or the person you care for.5
An early care plan may include lifestyle changes, such as regular exercise, a healthy diet and staying well-hydrated. Maintaining open and honest communication with your healthcare team will help ensure the most appropriate care approach, which could slow disease progression and potentially delay or prevent the need for dialysis or transplantation.7
Talking about the future for his son, Enrique said, “Our hope is that he will never need dialysis or a kidney transplant, and he can start a family, raise children, have the job he wants and live a meaningful life full of challenges and learning.”
Rare kidney disease video
Hear from Prof. Daniel Gale, Professor of Nephrology, Royal Free Hospital (UK) talking about rare kidney diseases and the challenges to diagnose.
florio NEPHREE: Track what matters. Empower your care.
Using florio® NEPHREE will support you in bringing structure to your daily life with C3G/IC-MPGN. Use it to track lab values, symptoms and medication in one place. Receive personalised reminders and short check cards so that you can always keep track of your taken medication and remember to note down any medical events.