Chordoma Foundation

Historically, the outlook for individuals affected by chordoma was not good. Even with the best care possible, only a minority of patients could be cured, and virtually no research was being done to develop better treatments. Moreover, patients and caregivers faced myriad challenges and had nowhere to turn for support.

The Chordoma Foundation was started to change that. To achieve our vision, we strategically invest in three mutually reinforcing programmatic areas that support our three core goals: research, patient services, and healthcare improvement.

With tens of billions of dollars spent on cancer research every year, a small foundation like ours cannot hope to have the impact we aspire to by conducting business as usual. That’s why we’re re-engineering the way research is done, to make the process faster and more efficient through:

Shared resources: Such as tumor tissue, cell lines, and mouse models that we make available to hundreds of researchers worldwide at no cost;

Parallel processing: Of chordoma and other types of cancer in large-scale research projects;

Focused investments: In projects identified as top priorities by the research community;

Incentives: That drive investment in chordoma research by scientists (e.g., prizes) and companies (e.g., viable path to orphan drug status);

Economies of Scale: That centralize commonly performed experiments to eliminate redundant investments and reduce time and costs; and

Collaboration: Between doctors, scientists, and companies with complementary interest, capabilities, and resources to carry out projects that none could do alone.

Over the past fourteen years, the Foundation has grown into the leading funder of chordoma research, an efficient catalyst for chordoma drug development, and a dependable source of information and support for thousands of patients and their loved ones across the world.

Despite long odds, the support, involvement, and generosity of our many friends and partners has fueled progress that is virtually unprecedented for a rare cancer, and helped fundamentally change what once was a lonely and bewildering journey for many chordoma patients. Together we have leveled the playing field for chordoma by:

Eliminating many of the obstacles that once stood in the way of research – such as lack of tissue, disease models, coordination among researchers;

Engaging hundreds of scientists worldwide to bring their expertise to bear on behalf of chordoma;

Applying powerful new technologies – like CRISPR, single-cell sequencing, and DNA-encoded chemical libraries – to the discovery of therapies that exploit chordoma’s unique vulnerabilities;

Accelerating the pace at which therapies developed for other cancers can be tested in the lab and brought to clinical trials for chordoma patients; and

Initiating seven new chordoma-specific clinical trials.

For the first time, there is now a credible path to making chordoma a manageable disease — to treatments that don’t just slow the disease down, but that have a real chance of enabling patients to get on with their lives. With adequate investment, these treatments are years, not decades away.

This is a profoundly significant opportunity for everyone whose life has been disrupted by chordoma. And it’s an opportunity that doesn’t come along often in the world of oncology.

Chordoma is a solvable problem. You can be part of the solution.

Your donation will accelerate cures and provide hope to those facing chordoma today.