Ask the Advocate: Proven Ways to Connect with Fellow CKD Patients

Living with chronic kidney disease (CKD) can feel isolating, but building connections with peers provides emotional relief and valuable practical advice.

CKD affects an estimated 37 million Americans—about 14 % of the adult population. Many also manage diabetes, high blood pressure, or other chronic conditions.

Healthline spoke with Dale Rogers, a patient advocate and board member of the American Association of Kidney Patients (AAKP), to explore the benefits of community support and practical ways to connect with others living with CKD.

Here’s what he shared.

This interview has been edited for brevity, length, and clarity.

“One of the most effective ways I’ve found is returning to dialysis units as a volunteer. I sit in the chair for about two hours each week. When patients hear that I’ve been in the same chair, they often pause their TV or book, turn to me, and start a conversation,” Rogers explained.

He added, “Seeing someone who has navigated the same hurdles gives hope and concrete ideas for overcoming challenges.”

Rogers emphasized that peer connections improve mental health and empower patients to take a more active role in their care. “Chronic illness inevitably brings mental‑health challenges. Talking with others—whether in person or online—helps you spot issues you might miss and offers fresh perspectives,” he said.

He also highlighted how peer dialogue can improve communication with doctors and families. “The more information you gather from fellow patients, the better you can frame questions for your limited appointments,” Rogers noted.

When asked about organized support, Rogers recommended joining a reputable national kidney organization. “I’m involved with AAKP because its mission aligns with my values. Choose a group that genuinely supports patients rather than exploiting them financially,” he advised.

AAKP offers several resources that Rogers finds especially useful:

• HealthLine and HealthLine Innovators webinars, which feature patient stories alongside medical experts and showcase the latest treatment advances.
• The annual National Patient Meeting, a networking hub for people living with kidney disease.
• An online directory of independent support groups across the United States.

He cautioned, “Social media can be helpful, but verify the source—some accounts prioritize profit over accurate information.”

After his kidney transplant, Rogers’ transplant nephrologist introduced him to national advocacy work, leading to deeper involvement with AAKP and opportunities to influence policy and congressional outreach.

“Once you learn to advocate for yourself, it feels natural to help others,” he said. “Programs like AAKP’s Ambassador Initiative let patients extend their advocacy from personal care to broader community impact, even on Capitol Hill.”

Dale Rogers lives with type 1 diabetes, high blood pressure, and CKD. He has received medication, dialysis, and multiple organ transplants, and he remains dedicated to guiding others through the challenges he has overcome.