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 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


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 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