Community Engagement Workgroup
To support and collaborate with hospital providers, researchers, and other patients and families while advocating to improve the outcomes for children and adolescents facing kidney transplant and chronic kidney disease.
Every IROC workgroup, team, and committee has a family or patient representative
85% of IROC centers report patient/family participation
Developed 11 educational blood pressure videos with commonly asked questions and easy-to-understand answers
Created most extensive compilations available of scholarships and summer camps for children with kidney disease
Maintain a patient/family experience blog containing common themes such as:
Parent’s Guide to Meds and Traveling
Sleepovers after Transplant
We are a group of patients, parents and other caregivers, hospital providers, and concerned community members working towards:
Broadening awareness of the value of collaborative health care
Expanding participation by patients, families, and providers within the IROC network
Identifying local leaders who will serve as engines of change to improve renal outcomes
What better way to learn about living with renal disease, if not from those who have been there. We are humbled to work with such inspirational patients, families and caregivers.
My daughter received her kidney transplant ten years ago. My involvement in IROC has allowed me to make connections with other patients and families from around the nation - something that was not possible before. We are given the rare opportunity to inform clinicians of the daily challenges patients and families face during post-transplant life. We are seen as valuable partners and our input is always encouraged. I am inspired by the ongoing collaboration between IROC centers which is helping to ensure the best possible outcomes for all pediatric kidney transplant patients.
--Ansara Piebenga, Children's Mercy, Kansas City
My daughter received a kidney transplant in July 2016 from Johns Hopkins and about a year later Hopkins introduced me to IROC’s Community Engagement Workgroup. I immediately became involved because IROC's mission to collaborate with hospitals and caregivers to improve outcomes for CKD patients aligns with my own desire to help other families become more educated about kidney transplants (pre and post). CEW's focus on educating patients/caregivers on tangible issues has been extremely beneficial. For example, I learned that even though Lily will most likely need medication to control her blood pressure in the coming years, I now know the strategies to best control her blood pressure so we can keep Lily healthy and extend the viability of her transplanted kidney.
--Amanda Goldstein, John Hopkins Children's Center
When I was asked to join IROC as a parent of a transplant patient I wasn't sure what to expect. What I have gotten is knowing that we aren't alone, that other parents likely have the same questions and concerns as me and comfort in knowing that this group works with our doctors and hospitals to collaborate on the best care possible for our loved ones. I'm very excited to be part of this group and have a great amount of excitement in knowing that the work being done in the group will help so many others along their kidney journey!
-- Deb Sternhagen, University of Iowa's Children's Hospital
"My experience with IROC has been highly beneficial as a parent caring for my son who was diagnosed with chronic renal failure at birth. This collaboration has been a useful educational tool for me. The materials and presentations made available have broadened my knowledge in caring for my son more effectively. I think it would serve as a great resource tool in my child’s health center as we would be developing data from a nationwide standpoint instead of just our local community. I am hopeful that this collaboration can create a hub where patients and families can connect and share their stories and experiences with one another and offer support. Educational resources made available through this site would be a helpful tool to parents trying to navigate and learn more about their child’s, or their own, complex diagnosis. I look forward in continuing to learn more about this great program and lending my voice as a parent to this amazing, and much needed collaboration."
-- Cassie Glotta, Children's Mercy Kansas City
I received a kidney transplant at age 15 (in 1994) from Johns Hopkins hospital. Since then I have worked with numerous transplant and kidney organizations with a goal of helping transplant recipients like myself. All these organization are great, but none reflect my personal mission as perfectly as IROC. I want all children with kidney transplants to not only survive but thrive to the fullest extent possible. IROC embraces this mission, and engages patients, families, clinicians and researchers. I am excited to be part of this amazing organization and can’t wait to see the differences we will make!
-- Kristin Hunt
If you are interested in learning more about how you can contribute to the Community Engagement Workgroup please take this survey so that we can learn more about you, your background and how we can best utilize your skills. Click here to access the survey.
Contact the Community Engagement Workgroup: