If you or someone you love has been diagnosed with a rare kidney disease, it can feel lonely. Chronic kidney diseases (CKDs) like C3 glomerulopathy (C3G) and immune-complex membranoproliferative glomerulonephritis (IC-MPGN) are so uncommon that you may not know anyone else who shares your diagnosis.

Sometimes, this might not bother you. Other times, you may want to connect with someone who truly understands. If you’re looking for a support group where you can talk about rare kidney diseases and how they affect your life, here’s what you need to know.

What Are the Benefits of Joining a Rare Kidney Disease Support Group?

A support group brings together people with similar experiences. Whether you’ve just been diagnosed, are managing ongoing treatments, or are supporting a loved one, these groups offer a space to share, learn, and find encouragement.

The benefits of joining a support group go beyond talking about kidney disease. Studies show that social support can improve overall well-being, mental health, and even survival rates for people with chronic illnesses, including kidney disease​. A strong support system can help you stay involved in your care, make informed medical decisions, and keep a sense of purpose despite the challenges of living with a rare condition. Many groups also provide support to friends and family members who want to learn how to help their loved ones with kidney disease.

Here’s how joining a rare kidney disease support group might improve your life.

Emotional Support

Doctors and medical staff are essential for your kidney care, but their main focus is treatment — not emotional support. Friends and family can be a source of comfort, but they may not fully understand what you’re going through. Connecting with people who have firsthand experience with rare kidney diseases can provide a sense of belonging. This can help reduce feelings of loneliness and anxiety.

Feeling socially isolated is a major concern for people with kidney disease, especially those on dialysis or with complex medical needs​. Studies show that social isolation can lead to higher rates of anxiety, depression, and even increased mortality. By joining a support group, you gain a network of people who truly understand your struggles. This can help you feel more in control and emotionally resilient.

Better Self-Care

Managing a rare kidney disease requires balancing medical treatments, lifestyle changes, and emotional well-being. Support group members can offer practical advice on handling daily challenges, such as:

• Managing dialysis schedules or medication side effects
• Coping with dietary restrictions (such as low-sodium or low-protein diets)
• Finding ways to reduce fatigue and boost energy
• Adjusting to life after a kidney transplant

Peer support has been shown to improve self-care and encourage healthier habits. When people share their experiences and solutions, it helps others stay motivated and engaged in their treatment​.

Increased Education

Rare kidney disease support groups can be a great source of information. Members often share their experiences with:

• Different treatment options (such as medications, dialysis, and kidney transplants)
• The stages of kidney disease and what to expect
• Finding a knowledgeable nephrologist (kidney specialists) or healthcare provider
• Kidney-friendly diets and lifestyle changes to improve health
• Clinical trials, new research, and advocacy efforts, such as those during National Kidney Month

Improved Outlook

A rare kidney disease can feel overwhelming. It might seem like you have little control over your health. However, joining a support group can empower you to take an active role in managing your condition. This can lead to greater hope and resilience.

Research shows that peer support doesn’t just help the person receiving it — it also benefits those providing support. Helping others has been linked to better mental health, lower rates of depression, and even longer survival in people with chronic illnesses​. Many people find purpose and meaning in sharing their experiences, which can make coping with a rare disease feel less isolating.

Ways To Find a Rare Kidney Disease Support Group

There are several ways to find support groups for rare kidney diseases. If one option doesn’t work for you, try another until you find the right fit.

Some organizations focus broadly on all types of kidney disease, offering general support for affected people, caregivers, and transplant recipients. Others specialize in specific rare kidney diseases, such as C3G, IgA nephropathy, focal segmental glomerulosclerosis (FSGS), polycystic kidney disease (PKD), and lupus nephritis.

Whether you’re looking for a large community or a disease-specific support group, these tips can help you connect with others who understand your journey.

Find Community Through Rare Kidney Disease Organizations

Many organizations, including nonprofits and private companies, offer support groups for rare kidney diseases:

• American Association of Kidney Patients (AAKP) support groups — AAKP provides lists of support groups by state, as well as virtual support options​.
• American Kidney Fund’s Rare Kidney Disease Action Network — This network connects people with conditions such as IgA nephropathy (IgAN), C3G, and other rare kidney diseases. It also offers opportunities for advocacy and sharing personal experiences​.
• NephCure — NephCure offers local support communities across the U.S., where people living with kidney disease, caregivers, family members, and advocates can connect, learn, and take action against rare kidney diseases.

Look for Online Support Groups

If you can’t find an in-person group or prefer online communities, here are some options:

• MyKidneyDiseaseTeam — MyKidneyDiseaseTeam is a free social network where members can get emotional support and share advice and insights on managing treatment or therapies for kidney disease.
• National Kidney Foundation (NKF) communities — NKF offers free online support forums where people with kidney disease, people undergoing dialysis, transplant recipients, and donors can connect​.
• NephCure — In addition to local groups, NephCure offers an online patient community for people to connect and learn. NephCure also hosts virtual groups that meet regularly over Zoom.
• Social media groups — Many kidney disease organizations have active groups on social media platforms like Facebook, LinkedIn, and Reddit. Searching for your specific condition may help you find a dedicated community.

Attend Rare Kidney Disease Events and Conferences

Many organizations host summits and events where you can connect with others learn, advocate, and fundraise.

• NephCure — NephCure hosts events such as Rare Kidneys on the Hill Day, where participants meet with members of Congress to discuss health issues. The group also holds Breakfast With NephCure events for networking and learning.
• American Kidney Fund — This organization offers live events, including its annual gala, mixers, and golf events. They also host an array of webinars for both people with kidney disease and healthcare professionals.
• National Kidney Foundation — The NKF lists events such as roundtables, walks, charity events, and receptions on its website.

Ask Your Doctor or Social Worker

Your healthcare team may know about local support groups at hospitals, kidney clinics, or dialysis centers. These groups might not be widely advertised online but can provide valuable connections.

Try an Internet Search

This article highlights many organizations, but there may be other support groups tailored to your specific condition. If you’re looking for a community that directly relates to your diagnosis, try searching online using terms like “[your diagnosis] support group” along with your location (if you’re looking for an in-person group).

Connect With Others Who Understand

On MyKidneyDiseaseTeam, people with kidney disease and their loved ones come together to ask questions, give advice, and share their stories with others who understand life with kidney disease.

Have you found support groups for people living with rare kidney diseases? What activities have you tried and enjoyed? Share in the comments below, or start a conversation by posting on your Activities page.