Launching a transformational, systemic approach to END rare cancer.

Why

Rare cancer is one of the greatest unmet medical needs we face today.

One in four cancer patients are diagnosed with a rare cancer. The bottom line is that for most of these rare cancers, no protocol for treatment or cure exists. While there continues to be obstacles, new technology and science make it possible to envision a path forward.

What

CURE: The Rare Cancer Initiative that will END rare cancer as we know it. 

The JEDI Rare Cancer Foundation has taken the lead, together with Dr. Gary Schwartz and other leaders at the Case Comprehensive Cancer Center and the Rare Cancer Research Foundation, in forming a rare cancer initiative to unite the entire rare cancer community at unprecedented scale to accelerate cures for all rare cancers.

Launching CURE: The Rare Cancer Initiative 

Jedi Rare Cancer Research Foundation is the key supporter and is anchoring the launch with a $5M commitment for CURE: The Rare Cancer Initiative at the Case CCC.

First, we convened a rare cancer workshop at Case CCC in November 2023.

After holding a stakeholder meeting for a national workshop that could build a systemic approach to defeat rare cancer, in November 2023 a group of 40 rare cancer academics, patient advocates, rare cancer philanthropies, and government (NCI and FDA) leaders including the former head of Obama’s Cancer Moon Shot, met at Case CCC in Cleveland for a two-day workshop that examined the issues and opportunities for rare cancer, resulting in a shared vision for carrying this important mission forward.

In preparation for the workshop, we commissioned a rare cancer landscape study. 

Our foundation's researcher interviewed experts representing rare cancer constituencies. The goal of the study was to assess the current state of rare cancer research, identify a consensus of unmet needs, understand the challenges that have prevented progress to date, and identify areas of progress that could form models for a scaled approach to defeat rare cancers. Read The U.S. Rare Cancer Landscape: A 2023 Report here.

INSIGHTS FROM THE RARE CANCER WORKSHOP

By Michael Rolnick. MD, Jedi Board of Directors Member

“What was unique and exciting about this rare cancer workshop was that there were many medical professionals with different contributions. An innovative planning process is different from a strategic planning process, so while we may not come to some kind of agreement, there were many ideas that percolated up through our conversations."

"There are people who do innovative thinking but they are few and far between. Many of these innovative thinkers were gathered in this room to focus solely on how to overcome challenges facing rare cancer patients. To me, that’s the beginning of a real solution."

"During the workshop, 4 groups focused on: patient-centered pathways; clinical research; biospecimens and data; and funding, government, and management. In my group, for example, we considered the identification of rare cancer patients as a comprehensive process, focusing on how to speed access and awareness for the patient, communication with primary care physicians and oncologists, to facilitate a fast and accurate diagnosis.”

"The Rare Cancer Initiative we envision is a national model of true collaboration among rare cancer professionals resulting in better outcomes for rare cancer patients. There is a difference between collaboration versus cooperation; what the medical field currently knows is cooperation. Envisioning how innovative thinking and collaboration can move forward is exciting. It's positive.”

A TRIBUTE TO MARK LAABS

Visionary, Advocate, Mentor & Friend

It is with immense sadness that we announce the passing of Mark Laab, Rare Cancer Research Foundation Founder and Chairman of the Board, due to metastatic ocular melanoma. His friendship, expert guidance, and support of our foundation has been invaluable. Early in life, Mark established guiding principles to live by, two of which were “make the greatest contribution you can over the course of your lifetime” and to “consider the impact of your decisions on the next seven generations.” RCRF’s mission to provide infrastructure solutions for all rare cancers, not just the one he was diagnosed with, demonstrates how fully Mark integrated these principles into his values and life.

1 in 4 cancer patients have incurable rare cancer. We are determined to change that.

Thanks to the guidance and generosity of our donor community, the JEDI Rare Cancer Foundation has assumed a key role where we can effectively impact change. Together, we will END rare cancer.

We invite you to support our innovative approach to rare cancer research support.

Join us in enabling leading researchers and clinicians to enact the most innovative and integrated approach to cancer research for better outcomes for rare cancer patients.

With gratitude,

Mark Taxel, Chair & Founder

Jedi Rare Cancer Foundation

Your generous donation has the power to save lives. Thank you!