Who We Are

Who We Are

We are a dedicated nonprofit organization recognized by the IRS as a charitable entity, committed to supporting individuals affected by Retroperitoneal Fibrosis (RPF). Our mission is to raise awareness, advance research, and foster a strong network of patients, caregivers, and medical professionals. By bridging the gap between those impacted by RPF and the medical community, we strive to improve diagnosis, treatment, and overall patient outcomes.

The Retroperitoneal Fibrosis Foundation is recognized as a tax-exempt nonprofit organization under section 50(c)(3) of the Internal Revenue Code. Contributions to the Retroperitoneal Fibrosis Foundation are tax-deductible to the fullest extent permitted by the law.

Our Community & Membership

Our Community & Membership

We believe in the power of connection. Our organization is growing into a global network of members, including RPF patients, caregivers, medical experts, and researchers. Through collaboration and shared knowledge, we aim to provide reliable information, emotional support, and advocacy for those affected by this rare condition. Whether you are a patient seeking guidance, a caregiver offering support, or a physician looking to contribute, our community welcomes you.

RPF Foundation Club

RPF Foundation Club

Launching the RPF Foundation Club at Pace Academy

Because Retroperitoneal Fibrosis (RPF) is rare, many people have never heard of it—and those who are affected often feel unseen. Building awareness is one of the most meaningful first steps. At Pace Academy, Teah Chrakwi led and organized the inaugural RPF Foundation Club meeting, creating a welcoming space where students learned what RPF is, how it can impact daily life, and practical ways to support peers and families. She coordinated content, outreach, and a guided walkthrough of the Foundation’s website so students could return to trusted resources any time.

Guided Resource Walkthrough

Teah walked attendees through the Foundation’s website, a trusted hub for patient stories, clinical overviews, and local support services students can reference anytime.

Mission & Impact Goals

She outlined the Foundation’s mission and long-term impact goals, emphasizing education, community support, and advocacy for people affected by RPF. Student-Led Initiatives at Pace Academy Under Teah’s leadership, the group brainstormed fundraising and awareness ideas tailored to the Pace community, from campus events to school-wide outreach.

Outcome & Ongoing Work

This kickoff laid the groundwork for a sustained, student-driven effort to educate peers, build support, and amplify RPF visibility at Pace Academy and beyond.

Leadership & Medical Collaboration

Leadership & Medical Collaboration

Our leadership is composed of a dedicated board and an esteemed advisory panel, which includes leading medical professionals, researchers, and patient advocates. Each member of our team is committed to advancing the understanding of RPF and improving patient care. The Mayo Clinic has played an instrumental role in our journey, providing invaluable expertise and support in shaping our initiatives.

How We Are Funded

How We Are Funded

We are entirely funded by charitable donations, which means every contribution goes directly toward our mission. Your support enables us to:

• Advocate for early diagnosis and better treatment options

• Increase awareness among physicians and the public

• Provide educational resources and patient support

• Fund groundbreaking research to unlock new insights into RPF

With no government funding or corporate sponsorships, we rely solely on the generosity of individuals who believe in our cause.

Why Your Donation Matters

Why Your Donation Matters

RPF is a rare and often misdiagnosed condition, leaving many patients struggling for answers and effective treatment. Your donation can change lives by funding crucial research, expanding our advocacy efforts, and ensuring that patients receive the support they need.

By donating today, you are directly contributing to:

• Innovative research aimed at improving diagnosis and treatment

• Awareness campaigns that educate medical professionals and the public

• A supportive community that empowers patients and their families

Our Vision & Online Presence

Our Vision & Online Presence

Our website will serve as a comprehensive resource hub, providing up-to-date medical research, patient stories, expert insights, and community engagement opportunities. We are building a platform where individuals affected by RPF can find the latest advancements, connect with others, and gain access to vital support services.

Join Us in Making a Difference

Join Us in Making a Difference

Our foundation is more than just an organization it is a movement to unite, educate, and empower the RPF community worldwide. Together, we can bring much-needed awareness, drive meaningful research, and ultimately improve the lives of those affected by this condition.

Join us today whether as a donor, member, or advocate and help us create a future where no one faces RPF alone.