Rare cancer is not rare: 1 in 4 is considered a rare cancer

Rare cancer patients and their families need our help. The Jedi Rare Cancer Foundation exists to support and advance cutting-edge research that translates into lifesaving treatments that can end rare cancer.
Jedi to raise $5 Million to fund CURE: The Rare Cancer Initiative

Announcements

Our Years of Progress

2021–2025 Report

In just 4 short years, driven by passionate, talented people and organizations representing medical institutions, academia, philanthropy, and government, our foundation is actively leading a movement dedicated to uniting the entire rare cancer community to accelerate research, treatment, and cures for rare cancers.

New Hope for Rare Cancer Patients on the Horizon

Case Comprehensive Cancer Center’s CURE: The Rare Cancer Initiative will transform rare cancer research to bring new hope to cancer patients and save lives around the world.

Rare Cancer Research Needs Our Support

Thanks to the guidance and generosity of our donor community, the Jedi Rare Cancer Foundation has a key role in supporting rare cancer research.

Why is it called rare cancer when it’s not rare

Rare cancer comprises approximately 25% of cancers diagnosed annually, yet rare cancer patients and their families have little or no hope of positive outcomes. What is tragically obvious to rare cancer researchers, medical scientists, hospitals, and doctors is widely unknown until a loved one is diagnosed with a rare cancer.

Approximately
%
of cancer diagnoses
are considered rare

patients are diagnosed with a rare cancer each year in the U.S. alone

Impact through action and research

Rare Cancer Workshop

In November 2023, we convened a rare cancer workshop at Case Comprehensive Cancer Center in Cleveland, Ohio. 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 convened to examine the issues and opportunities for a systemic approach to defeat rare cancer, resulting in a shared vision for carrying this important mission forward.

The U.S. Rare Cancer Landscape: A 2023 Report

by Laura Taxel, commissioned by The Jedi Rare Cancer Foundation 

Prior to the workshop, we commissioned “The U.S. Rare Cancer Landscape: A 2023 Report.” Our researcher interviewed multiple experts representing rare cancer constituencies 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.

What will be my legacy?

The Jedi Rare Cancer Foundation was founded in 2021 as a living memorial to Jed, who died in 2017 of a rare cancer. Our mission is to inspire and empower scientific breakthroughs, clinical trials, and improved treatments that change lives and enable better outcomes for rare cancer patients and their families.
Jed Ian Taxel | January 17, 1978–October 11, 2017

More healthy survivors, less family heartbreak.

Your generous donation has the power to save lives.

Together, we will END rare cancer.

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Platinum Transparency 2023 Candid

The Jed Ian Taxel Foundation for Rare Cancer Research | P.O. Box 683501 Park City, Utah 84068

The Jed Ian Taxel Foundation for Rare Cancer Research, Inc. is a 501 (C)(3) Non-Profit Organization, accepting Tax Deductible donations from individuals, corporations, family-advised funds and foundations. Federal Tax ID 86-2610819

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Learn about lifesaving rare cancer research, foundation news, events, and discoveries that make a real, measurable difference in the lives of rare cancer patients and their families.