The Retroperitoneal Fibrosis Foundation
Building a Community, Funding Research and Sharing knowledgeBringing Light
to Retroperitoneal Fibrosis
The Retroperitoneal Fibrosis Foundation is a non-profit with the mission of raising awareness, accelerating research, and supporting those affected by Retroperitoneal Fibrosis (RPF), a rare and poorly understood disease that can cause devastating complications and prolonged suffering.
Our Story
This foundation was born from my personal journey as the daughter of an RPF patient. My father endured years of debilitating abdominal pain and misdiagnoses, despite full access to medical care. It took two years for him to finally be diagnosed with Retroperitoneal Fibrosis and receive the proper treatment. My father lost a kidney, endured multiple hospitalizations, and faced complications due to misdiagnosis by specialists who lacked knowledge of Retroperitoneal Fibrosis. Too often, misdiagnosis means it’s too late to save organs. Through this journey, I realized that no one should have to endure such uncertainty and pain alone.
RPF’s rarity, combined with limited medical awareness of the disease, often leads to delayed diagnoses and unnecessary suffering. Our nonprofit is dedicated to bridging the knowledge gap to ensure that both patients and physicians have access to vital information for earlier detection and intervention. Through donations, we will fund critical research to better understand and treat this complex disease. Our most ambitious goal? Within two years, we plan to host the first-ever medical conference dedicated to Retroperitoneal Fibrosis. Every donation, big or small, makes an impact. Please consider supporting our foundation and helping us change lives.
With gratitude,
