Meet IROC Family Partners: A Community Built for Families Like Yours

If you have been part of the pediatric kidney transplant community for a while, you may remember a group called the Community Engagement Workgroup, or CEW. That group has grown into something even more powerful. Today, it is called IROC Family Partners, and Transplant Families is proud to call them one of our most trusted partners.

What is IROC Family Partners?

IROC Family Partners is a patient and family-driven community within the Improving Renal Outcomes Collaborative (IROC), a national learning health network dedicated to improving the lives of children with a kidney transplant.

IROC Family Partners advocate for patients and families navigating chronic kidney disease and transplant, while helping to shape programs, education, and research that improve outcomes and quality of life. Through shared lived experience, Family Partners collaborate with clinicians, researchers, and other families to elevate the patient voice, build community, and drive meaningful change across the pediatric kidney transplant ecosystem.

From CEW to IROC Family Partners: the same heart, a stronger name.

For families who found their footing through the Community Engagement Workgroup, know that the mission has not changed. The people who built that community, the values that drove it, and the commitment to putting families at the center of kidney care research are all still very much alive. IROC Family Partners is CEW, grown into its full potential.

The new name reflects how much the program has evolved. What started as a workgroup is now a full community, with national reach, a dedicated web presence, and active participation in every IROC workgroup, team, and committee. Every single IROC workgroup has a family or patient representative. That is not an aspiration. It is a structural commitment.

What IROC Family Partners actually does for families.

This is not a passive advisory group. IROC Family Partners gives families real tools, real access, and a real seat at the table:

Best practices in kidney transplant and CKD care management. Members learn what is working across the country, not just at their local center, and bring that knowledge home.

Peer connection with families across the country. There is something irreplaceable about talking to another parent who has sat in the same chair, tracked the same labs, and felt the same 3am worry. IROC Family Partners creates those connections intentionally and systematically.

A direct voice in how kidney care improves nationwide. Members help IROC identify what matters most to families, surface gaps in care that clinicians might not see, and shape the research questions that get asked. This is family-centered care in its truest form.

Local leadership opportunities. IROC identifies and supports local family leaders who serve as engines of change in their own communities and transplant centers.

In their own words.

Nothing describes the value of IROC Family Partners better than the families who have lived it.

One parent whose daughter received her kidney transplant ten years ago shared that her involvement in IROC gave her something she did not have before: connections with families from across the nation. She described being seen as a valuable partner, with her input actively encouraged, and finding inspiration in the ongoing collaboration between centers working to improve outcomes for all pediatric kidney transplant patients.

Another parent, whose son was diagnosed with chronic renal failure at birth, described IROC as a useful educational tool that broadened his knowledge in caring for his son more effectively. He spoke of hoping the collaboration could create a hub where patients and families connect, share their stories, and offer support to one another.

That hub exists. It is IROC Family Partners.

How to get involved.

IROC Family Partners welcomes patients, caregivers, and families at every stage of the kidney transplant journey. Whether you are newly post-transplant or years out, whether your child is a toddler or aging into adult care, there is a place for you here.

Join the community: irocnow.org/community-engagement

Get support and resources: irocnow.org/resources

Follow their community on social: @irocfamilypartners on Facebook and Instagram

If your family is connected to an IROC participating center, ask your transplant team about how to get involved. And if you are not sure whether your center participates, the IROC website is the best place to start.

Why Transplant Families is proud to stand alongside IROC.

At Transplant Families, we believe that families are not just the recipients of good medicine. They are essential partners in creating it. IROC Family Partners lives that belief in a way that is rare and meaningful.

This March, as we celebrate Kidney Month and the strength of our community, we want every kidney transplant family to know that this resource exists, that it was built for you, and that the people inside it are families just like yours who chose to show up and make things better for everyone who comes after them.

That is what this community does. We show up.

With love,

Transplant Families