C3G Awareness Day: Listening to the voices behind the diagnosis

25 September, 2026 08:00

For people living with C3G and primary IC-MPGN, receiving a diagnosis can be one part of a much longer journey.

For some, getting answers can take months or even years, bringing uncertainty and challenges in navigating care and finding clear, reliable information.

This C3G Awareness Day, on 25 September, Sobi is not only raising awareness of these rare kidney diseases but also the experiences of the people who live with them every day.

In July, patients, caregivers, patient organisations and healthcare professionals came together at our global Patient Council meeting in Milan, Italy, to share their experiences and perspectives.

Throughout the discussions, participants highlighted what matters most to them:

timely and accurate diagnosis
clear and trusted information
support throughout the journey
feeling informed and involved in decisions about their care

“Bringing people together and hearing directly from patients, caregivers and advocates is vital. Everyone contributes a different piece of the puzzle – their own experiences, challenges and ideas about what could make a difference. By bringing these perspectives together, we can build a fuller picture of what people living with C3G and primary IC-MPGN need and how we can work with the community to better support them.”, says Donatella Decise, Global Director, Patient Engagement.

Alongside the challenges of living with a rare kidney disease, the conversations also highlighted a strong sense of hope. By listening to people with lived experience, we can better understand what matters most to them and use these insights to help transform everyday life for people living with rare diseases.

This C3G Awareness Day, hear directly from members of the community as they share their experiences in the video below.

C3G Awareness Day: Listening to the voices behind the diagnosis

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