The Rare Kidney Disease Labyrinth Documentary Launch

Sobi Launches New Documentary Spotlighting Life With Rare Kidney Disease 

Coinciding with World Kidney Day, Sobi today announces the launch of a powerful new documentary sharing the real-life stories of individuals, families and caregivers living with ultra-rare kidney diseases.

Titled The Rare Kidney Diseases Labyrinth Challenge, the film offers an intimate and moving portrayal of the hidden realities, uncertainty and hope of those navigating life with conditions such as Complement 3 Glomerulopathy (C3G) and primary Immune Complex–Mediated Membranoproliferative Glomerulonephritis (IC-MPGN).
 

A journey brought to life 

On 21 September 2025, patients, caregivers and physicians from Colombia, Finland, Germany, Iceland, Italy and Switzerland came together at the Labirinto della Masone in Fontanellato, Italy - home to a large bamboo maze that serves as a powerful visual metaphor for the unpredictability and persistence involved in living with a rare kidney disease. 

For people impacted by rare kidney diseases, such as C3G or primary IC-MPGN, life rarely follows a straight path. The uncertainty can feel much like navigating a maze - filled with unexpected turns, difficult decisions and moments of doubt.

The documentary follows participants at different stages of their health journey including:

• Past experiences of seeking answers whilst navigating a long and complex road to diagnosis
• Present realities of building support networks whilst managing ongoing care and adapting to changing needs
• Looking ahead to the future with resilience and hope  
   

For many involved, the event marked the first time they had met someone else living with the same condition – an important reminder of how meaningful connection can be, particularly within ultra-rare diseases.
 

Amplifying patient voices
 

Through candid interviews and personal moments, The Rare Kidney Disease Labyrinth Challenge explores not only the physical realities of rare kidney disease, but also the emotional and social impact on individuals and their families.

“Behind every rare disease statistic is a human story,” said Donatella Decise, Global Patient Engagement Director at Sobi. “As part of the CL3AR Expectations for Your Kidney’s Health campaign, this documentary reflects Sobi’s commitment to listening to patients, amplifying their voices and working towards meaningful innovations that address unmet medical needs.” 
 

Watch now

The documentary is now available to watch on www.livingwithC3G-ICMPGN.com, alongside further information and educational assets. 

Through initiatives such as The Rare Kidney Disease Labyrinth Challenge, Sobi continues to champion patient-centred collaboration and the development of therapies designed to improve outcomes and quality of life for people living with rare kidney diseases.

Watch the film. Feel the journey. Find the way forward.
 

Visit livingwithC3G-ICMPGN.com

The Rare Kidney Disease Labyrinth Challenge Documentary

The challenge took place in Fontanellato (PR) Italy, September 20th, 2025.

Finding your way through the unknown
 

Living with a rare kidney disease like C3G or IC-MPGN can feel like navigating a labyrinth — complex, confusing, and often lonely. The Rare Kidney Disease Labyrinth Challenge follows real patients, families, and experts as they face this maze together, searching for answers, hope, and connection.

This documentary sheds light on the hidden realities of rare kidney diseases — the uncertainty, the resilience, and the power of community. Step inside the labyrinth and discover how knowledge, empathy, and science can turn confusion into clarity.

Watch the film. Feel the journey. Find the way forward.