If you’re living with chronic kidney disease (CKD), or are caring for someone with the disease, you’re not alone. Support groups, discussion forums, blogs, and other community gatherings abound, both in person and online. Sharing your experiences, trading advice, and simply speaking with others who truly understand what you’re going through can feel comforting and therapeutic. Whether you’re new to your challenges or have been struggling alone, here are some resources to help you find a safe, supportive space.* 

National and nonprofit organizations 

There are quite a few national and nonprofit organizations that offer established support communities for both people living with kidney disease and their caregivers. Most support groups are free and are easy to join. 

Here are a few of the most well-known organizations:

• National Kidney Foundation (NKF)
• American Association of Kidney Patients (AAKP)
• DaVita Kidney Care
• Renal Support Network
• Kidney & Urology Foundation of America (KUFA)
• Dialysis Patient Citizens (DPC)

Other available resources

For those who prefer in-person support groups or are seeking a specialty group, such as for people on hemodialysis, speak to members of your healthcare team, such as your nephrologist or the renal therapy social worker at your dialysis center. There may also be smaller, regional organizations whose staff members are more knowledgeable about support group activity in your area. 

Can I start a support group?

If you’re unable to find a support group in your area that suits you, you might want to consider starting your own. Some of the national and nonprofit organizations listed above can help you set up a local chapter and provide guidance on how to create and facilitate a support group. A renal social worker can also be a good source of advice.

The following questions can also help you decide whether or not to start a new support group:

• Can you commit the necessary time and energy to an ongoing project?
• Do you feel comfortable recruiting members, coordinating meetings, and taking charge?
• Do you have the skills to facilitate meetings in a respectful, culturally sensitive manner, even if someone becomes disruptive or tries to dominate the conversation?

How do you create a local support group? 

If you feel committed to starting a support group from scratch in your area, you can keep things simple by doing some prep work and not trying to go it alone. 

Some helpful steps to take include:

• Finding co-leaders to share the leg work
• Defining your target audience, for example, newly diagnosed or on dialysis
• Choosing a name for the group and a time, location, and frequency for the meetings
• Get the word out about the group and collect contact information for those interested
• Create an agenda for meetings
• Connect frequently with members to keep them updated and feeling included

*DaVita Kidney Care. (n.d.). Support Groups for People Living with Kidney Disease. https://www.davita.com/education/ckd-life/support/support-groups-for-people-living-with-kidney-disease