Letter from the Chair

Your Support Matters Now More Than Ever 

In these uncertain times, we want to update you, our valued supporter, on how we are deploying foundation resources and how announced policy changes in Washington are impacting the rare cancer research and patient communities.

In October 2024, we founded the Alliance for Rare Cancers (ARC) and invested funds for facilitating its coordination of an unprecedented national alliance of rare cancer leaders from academia, foundations, and government to create a strategic action plan and subsequent initiatives to accelerate progress in rare cancer research. The vision cast by ARC is to make the proven “Cure Machine” of the American healthcare innovation system work for the one in four cancer patients diagnosed with a rare tumor–to innovate initiatives that will accelerate the path to cures for every rare cancer.

Below are the programs ARC and our foundation have initiated that are currently in development. Please feel free to contact me for additional information.

Your support helps to fund the work that makes this possible. Our ARC collaborators report that major grant programs have been put on hold, cut back, or cancelled. With the conditions we read about daily, privately funded research is more critical than ever.

Alliance for Rare Cancers

A place for large-scale initiatives, professionally managed to succeed at scale

By Shelby Doyle, PhD, ARC Interim Executive Director, VP & Secretary

As a nonprofit collaborative consortium, the Alliance for Rare Cancers (ARC) is pursuing scalable operational solutions to rare cancer challenges with a commitment to open-source research and patient-centered design.

Since founding ARC last fall, the Alliance's Board has worked to sharpen an operational approach. We see an opportunity for ARC to be a multiplier: leveraging a modest amount of funding for ARC itself to lead the alignment of stakeholders in pursuit of 10X the amount of funding from major public and private funders to scale successful models through collaboration.

If we succeed, ARC will provide the coordinating leadership to launch new initiatives and deliver the professional management necessary for successfully executing highly collaborative programs needed for rare cancers. This message is resonating with stakeholders and major funders and has recently earned Jedi Foundation, as the fiscal sponsor of ARC, a membership in the APRA-H Catalyst Hub Network.

What types of initiatives is ARC undertaking?

Decision-making tools to grant rare cancer patients access to the latest cancer treatments.

There are new, highly beneficial therapies approved to treat any type of tumor that possesses specific biomarkers. However, many rare cancer patients lack access to these treatments because they are not offered the necessary biomarker tests as standard of care. ARC has brought together the nation's leading cancer research society and researchers behind AI technology from one of the world’s largest technology corporations with a plan to create an AI-based biomarker diagnostic tool for rare tumors. The success of this project will create a scalable, cost-effective path to ensure rare cancer patients have access to the latest targeted therapies.

A landmark initiative to discover better treatment approaches by characterizing patient biopsies.

Researchers must have three things to develop new treatments for cancer: biopsy tissue, data, and tumor models. ARC is coordinating a landmark initiative to ensure rare tumor biopsies are turned into professional-quality data and tumor models for research. Building on the model of CURE: The Rare Cancer Initiative at Case Comprehensive Cancer Center and the research platforms built by the Rare Cancer Research Foundation, ARC has facilitated the design of a bedside-bench-bedside initiative at nationwide scale, and is beginning conversations with major U.S. philanthropic science-funding organizations about this scalable model. This program has the power to start a flywheel of rare cancer drug discovery, providing the professional-quality research resources necessary to attract pharmaceutical investment in new therapies for rare tumors.

We invite you to visit Allianceforrarecancers.org to learn more.

Together, we can END rare cancer.