Support Groups for People Living with Kidney Disease

Talking to others who are also going through chronic kidney disease (CKD) or dialysis can be a much-needed opportunity to vent, share information, get advice and receive and provide support.

Nowadays, support groups can be found in all sorts of places. One great place to connect with others is online. There are many discussion forums and email lists that help bring together people who share a common interest. While there are numerous websites, discussion forums, blogs and email lists, below are a few samples of where to find online support groups.

The DaVita.com discussion forum and myDaVita.com groups

The DaVita.com forum is a place where people with CKD, those on dialysis (either at home or at a center), as well as family members and friends, can talk online. Some topics include sharing your experience, diet Q&A with dietitians, working on dialysis, travel and more.

You can also join or create a group on myDaVita.com, the online resource to help you manage and understand all aspects of your kidney health.

It’s easy and free to register if you want to participate.

Other resources to find support

Several national, nonprofit organizations have websites devoted to educating and empowering those interested in kidney disease.

1. National Kidney Foundation (NKF)
2. American Association of Kidney Patients (AAKP)
3. Renal Support Network
4. Kidney & Urology Foundation of America (KUFA)
5. Dialysis Patient Citizens (DPC)

How do I find an in-person support group in my area?

Renal social workers are available in the centers to provide information on existing support groups. For those not on dialysis or dialyzing at home, it may take a little more effort to find a support group.

Speak to your doctor about any groups or organizations he or she may know of in your area. You might also contact local dialysis centers (even if you are not on dialysis) to find out if the social workers at the centers, know of any local support groups.

How can I start my own support group?

Consider starting a group in your area where members can meet face-to-face. Some of the national, nonprofit organizations help with setting up local chapter support groups and may even provide some financial support.

You may want to arrange a meeting with a renal social worker in a local dialysis center. Because social workers have expertise in group dynamics and other factors related to creating a successful support group, talking to a social worker is a great first step.

Are you ready to be a support group leader?

Ask yourself the following questions before you commit to creating a support group:

• Do I have the time to plan, conduct and recruit a support group?
• Will I be able to attend every meeting?
• Am I comfortable speaking in front of a group?
• Can I effectively keep meetings on track?
• Am I able to maintain a positive, encouraging and hopeful attitude?
• Am I a good listener?

If you answered, “Yes,” to most of these questions, you may want to start forming your group. Other things to consider when forming your group include:

• Appoint co-leaders to help you share the work.
• Define your group’s target audience. Is it for people with early stage kidney disease or people on dialysis or both?
• Select a name.
• Choose a meeting time, place and frequency.
• Advertise the group and your meeting times.
• Make an agenda for you meeting
• Stay in touch with members via email.

You aren't alone with kidney disease

There are millions of people in the United States who are affected by kidney disease. Reach out online or in-person to find those who share your experience and get the support you need.

Disclaimer: The websites and other online services mentioned in this article are provided for informational purposes only. The authors make no representations about the information contained on any these websites or online services and disclaim any liability there for.