Finding Strength Together: Support for Life with C3G and primary IC-MPGN
Living with Complement 3 Glomerulopathy (C3G) or primary Immune Complex Membranoproliferative Glomerulonephritis (IC-MPGN) can bring new experiences, new routines and sometimes new questions. Because these conditions are uncommon, it’s not unusual to feel like others may not fully understand what you are going through at first.
Connection can make a real difference. Support networks, big and small, can bring understanding, encouragement and a sense of community.
This article explores different kinds of support available and how they can help you and your family feel informed and connected.
The Role of Peer Support in Rare Kidney Disease
Peer support simply means connecting with people who “get it” – other individuals or families living with similar conditions who can share what has helped them along the way.
For people living with C3G and primary IC-MPGN, these connections can be meaningful. Hearing someone else’s story, or sharing your own, can help you feel understood and less alone. It also creates space to exchange practical ideas, tips and insights that come from lived experience.
Why Support Groups Can Be So Helpful
Being part of a support group – whether online or in person – can add a lot of comfort and clarity to your day-to-day life. These groups often share advice on managing care, navigating appointments, eating well or simply finding a good balance to everyday routines.
Most importantly, they offer a space where you can express how you’re feeling, listen to others and build uplifting connections. Over time, many people find that being part of a community helps them feel more confident and more able to manage life with C3G or primary IC-MPGN.
And support goes both ways. Sharing your own experiences or offering encouragement to someone else can also strengthen your own wellbeing.2
Here are a few types of support groups and what they offer:
Type of Group
In-person meetings
What They Offer
A chance to meet others face-to-face, gain real-time support, build trust and form meaningful friendships
Type of Group
Online forums
What They Offer
Online spaces provide flexibility to connect whenever suits you. They are especially useful if you live in a rural area or find travelling difficult. Conversations often stay available to read back later
Type of Group
Social media communities
What They Offer
Social platforms provide quick support, up-to-date news on events, shared stories and global perspectives
Type of Group
Webinars
What They Offer
Expert insights from healthcare professionals, with opportunities to ask questions and learn more about your condition.
Magally, a caregiver from Colombia, shares how online support helped her learn more about her son’s C3G:
“I searched on Facebook, and I found a group that really helped us a lot - it [helped us] understand beyond the medical part. It was understanding what the journey has been like for other people and that it wasn’t the end.”
How to Find Support Groups
There are many welcoming places to start:
- Ask your healthcare team. Your doctors, nurses, or renal clinic staff may know of local groups linked to hospitals or charities. Some kidney units also have patient liaison officers or psychologists who organise sessions for people with long-term conditions
- Look to kidney charities and patient organisations. Many run support groups, patient events, and online communities, providing opportunities to connect with others who share similar experiences
- Explore rare disease networks. Organisations such as EURORDIS (Rare Diseases Europe) and APARDO (Asia Pacific Alliance of Rare Disease Organisations) provide ways to link up with patient communities, share experiences, and access practical information
Support for Caregivers
Caring for someone with C3G or primary IC-MPGN can be both meaningful and demanding. Parents, partners and friends can find themselves juggling appointments, meal planning, symptom tracking and offering emotional support – all while looking after their own wellbeing too.
Caregivers play an important role in daily life, and having a support network can help make that role feel more balanced and sustainable.
Here’s how Stella, a mother of a daughter with C3G, describes what helps her feel grounded:
“For me to stay strong in this [journey] and keep balanced I stay active and meet friends to get support. I do sports and I run, and I try to spend as much time as I can with my daughter and we do a lot together as a family. So yeah, I get social support and you know, take care of myself.”
Further Resources
Here are some trusted organisations and communities offering information, connection and support for people living with C3G, primary IC-MPGN and other kidney conditions:
- CompCure: Learn about C3G and primary IC-MPGN through an international registry, awareness campaigns, and connections with experts and fellow patients
- World Kidney Day: Find global kidney health campaigns, educational materials, and knowing-how-to-get-involved resources
Additional caregiver resources:
- NephCure: NephCure provides online patient communities and hosts virtual and in-person events to bring patients, caregivers, and researchers together
- Rare Disease Caregiver Resources by Global Genes: Global Genes, in partnership with the National Alliance for Caregiving, has developed resources to assist caregivers of individuals with rare diseases, including C3G and primary IC-MPGN. These resources offer guidance on managing the emotional and practical aspects of caregiving, as well as strategies for accessing support networks
- Rare Kidney Diseases Toolkit by the International Society of Nephrology (ISN): The ISN’s Rare Kidney Diseases Toolkit aims to raise awareness and provide resources for caregivers of individuals with rare kidney diseases. It includes disease-specific tools and information to help caregivers understand the challenges and support their loved ones effectively