Leading Organizations Unite to Launch the Pediatric Renal Tumor Coalition
The newly launched Pediatric Renal Tumor Coalition (PRTC) brings together leading experts and national organizations focused on childhood cancer research and advocacy to accelerate progress for children diagnosed with kidney cancers.
Founding members of the PRTC include the Kidney Cancer Association (KCA), Joey’s Wings Foundation, Wilms Cancer Foundation (WCF), Elevate Childhood Cancer Research and Advocacy (Elevate), and Kelly Trout, BSN, RN, Director, Research and Medical Advocacy, International WAGR Syndrome Association and a long-time advocate for children with rare diseases.
“As a coalition of foundations and organizations, we seek to bring about better outcomes for those diagnosed with pediatric renal cancer,” said Robyn Spoon, CEO of Elevate. “Together, we believe collaboration is the key to creating lasting change.”
About Pediatric Renal Cancers
Pediatric renal cancers are a group of childhood cancers that originate in the kidneys. The most common is Wilms tumor, which affects approximately 600 children in the United States each year. While many children respond to treatment, about 20% relapse, and many more experience serious long-term side effects such as kidney failure, heart damage, and secondary cancers.
Other pediatric kidney cancers include:
- pediatric renal cell carcinoma (RCC) (3-7% of pediatric kidney tumors)
- translocation RCC (20-40% of pediatric RCC cases)
- clear cell carcinoma of the kidney (3-5%)
- rhabdoid tumor of the kidney (1-2%)
- renal medullary carcinoma (<1%)
- congenital mesoblastic nephroma (4-5% of tumors in infants).
Collectively, these pediatric kidney cancers account for a minority of cases but pose outsized clinical challenges. Many of these cancer types are aggressive and poorly understood. Progress in biology-based diagnostics and new therapies has lagged behind due to the rarity of these diseases – and consequently the difficulty in enrolling sufficient participants in clinical trials – leaving them underrepresented in research.
Lacking effective new drugs, care providers often rely on traditional chemotherapy to treat pediatric kidney cancer patients. While Wilms tumor often responds to intense chemotherapy, such regimens increase the risk of long-term harm, leaving survivors of pediatric kidney cancer with significant health burdens.
“The PRTC is critical to address the unique challenges of renal cancers in children,” said Kathy Liu, Founder & President of Joey’s Wings Foundation. “These cancers, such as Wilms tumor and renal cell carcinoma, are rare but devastating, requiring specialized research, treatment, and support that are often underfunded and overlooked compared to adult cancers. By uniting stakeholders – researchers, families, clinicians, and policymakers – a pediatric renal tumor coalition can drive innovation, improve outcomes, and give hope to young patients facing these life-altering diseases.”
“Children with rare diseases like WAGR syndrome face a heightened risk of Wilms tumor and other pediatric kidney cancers, yet research and resources for these conditions remain disproportionately scarce.” Trout said. “As a nurse and advocate, I’ve seen firsthand the urgent need for collaboration to advance precision therapies and reduce the lifelong burden of treatment. The PRTC unites us in a shared mission: to transform the landscape for these vulnerable children—ensuring no family navigates this journey alone, and no breakthrough is left undiscovered.”
Pediatric Renal Tumor Coalition
The PRTC’s mission is simple and urgent:
To bring about better outcomes for those diagnosed with pediatric renal cancer.
What We Do
The PRTC is already taking action. The coalition is:
- Hosting focused scientific events to drive improvements in care and discovery
- Investing in basic biology and translational research
- Offering grants to early-career researchers to build future leadership
- Creating and distributing educational materials for families, clinicians, and advocates
- Advocating on key working groups and federal grant review panels
“Through our collaborative efforts we will be far better positioned to achieve our mutual goals in support of all those affected by pediatric renal cancer: children, families, healthcare professionals, and the medical and research teams who all work tirelessly to tackle these diseases on a daily basis,” said TJ Hodgkinson, CEO of WCF.
“These cancers are rare but the need for progress is not,” said Dr. Salvatore La Rosa, KCA’s Chief Scientific Officer. “Through joint action, we can build the infrastructure and momentum that children with kidney cancer – and their families – deserve.”
For more information or to connect with the Pediatric Renal Tumor Coalition, please contact the member organizations:
Elevate Childhood Cancer Research and Advocacy, Inc.
Elevate’s mission is simple but profound: to save and improve the lives of those diagnosed with childhood cancer. Elevate strives for a world where every child diagnosed with cancer has access to precision medicine from day one. A world where families are empowered with the best possible information to make critical decisions—whether navigating treatment, survivorship, or the hardest moments near the end of a child’s life. To get there, we operate with focus and urgency. We empower families through educational resources and community. We advocate for smarter policies and funding that reflect the urgency and promise of childhood cancer research. As such, Elevate supports and trains advocates wishing to make meaningful improvements for those facing pediatric renal tumors, such as Wilms, and rhabdomyosarcoma. We invest strategically—supporting research, clinicians, and systems that bring precision medicine and compassionate care to every child who needs it. Most importantly, we connect the dots between researchers, clinicians, industry, policymakers, and families.
www.elevatechildhoodcancer.org
info@elevatechildhoodcancer.org
Facebook, Instagram, LinkedIn, YouTube: @elevatechilldhoodcancerresearchandadvocacy
Joey’s Wings Foundation
Joey’s Wings Foundation, a 501(c)(3) nonprofit established in 2014 in memory of Joey Xu, a 10-year-old who succumbed to translocation renal cell carcinoma, is dedicated to supporting children and young adults with kidney cancer through research, advocacy, and family support. Our foundation is supported by an active Board of Directors operating solely on a volunteer basis. 100% of all donations made is used towards research and treatment options, patient care and advocacy for developing less toxic therapies to treat kidney cancer among children and young adults.
www.joeywings.org
kathy@joeywings.org
Instagram, LinkedIn, X, YouTube: @joeyswings
Facebook: @joeyswingsorg
Kidney Cancer Association
The Kidney Cancer Association (KCA) was founded in 1990 by Eugene P. Schonfeld and a small group of patients and doctors in Chicago, Illinois and has grown into an international non-profit organization. The KCA promotes scientific advances through two annual research symposiums and a robust grant program, participates in legislative advocacy, and seeks to be a source of education and resources for patients, caregivers, and anyone impacted by kidney cancer.
www.kidneycancer.org
office@kidneycancer.org
Facebook, Instagram, LinkedIn: @kidneycancerassociation
X: @kidneycancer
Wilms Cancer Foundation
The Wilms Cancer Foundation (WCF), is a charitable organization that supports and represents the needs of children, families and healthcare organizations affected by the childhood kidney cancer nephroblastoma commonly known as ‘Wilms’. The WCF’s mission is to establish an international program of awareness, education, advocacy, early detection and treatment to tackle the spread of childhood kidney cancer. We also seek to support children, families and organizations as they tackle cancer on a daily basis, through initiatives such as our ‘Dream-Making’ program, in order to lighten the emotional and financial burden they face.
www.WilmsFoundation.org
info@WilmsFoundation.org
Facebook: @WilmsCancerFoundation
Instagram:@WilmsFoundation
X: @WilmsCancer