This Pivotal Moment
Two decades of compounding progress—driven by patients and their loved ones, clinicians, researchers, donors, and partners—has brought us to a moment of unprecedented opportunity.
Advances in surgery and radiation are helping patients live longer with better quality of life. The first beneficial drug therapies are offering options to patients with advanced disease who previously had none. And a deepening understanding of chordoma biology, combined with emerging treatment modalities, is opening the door to more precise and powerful treatments—including those targeting chordoma’s defining vulnerability, brachyury.
At the same time, we’ve created research capabilities like CF Labs that enable a new level of progress toward better treatments, developed the capacity to reach and serve patients and families worldwide, and built the organizational strength needed to take on even bigger challenges ahead. Rapid technological advances, especially in AI, are further expanding what’s possible.
As a result, we can now credibly envision a future with more effective treatments, increasingly personalized care, and better patient outcomes. For many, chordoma could become a manageable chronic disease; for a growing number, it could be overcome entirely.
Realizing this potential will require clear strategic focus, new initiatives, and a concerted investment of time, energy, and resources. Developed with input from across our community, our 2030 Strategic Plan focuses our collective efforts on three ambitious priorities that move us closer to a future in which every patient can overcome chordoma and live well.
Photo: Dr. Ziya Gokaslan with chordoma patient Susie Rinehart
The Path Forward: Our Three Strategic Priorities
From 2026 to 2030, we will advance the next phase of our mission by focusing on the following priorities:
Optimize Care and Support
Help more patients fully benefit from the latest medical advances and achieve better health outcomes by improving access to evidence-based care, and enabling faster care improvement.
Deliver Better Treatments
Double the number of effective drug therapies for chordoma, while paving the way for even more powerful next-generation therapies and the first approved drugs for chordoma.
Achieve a New Level of Impact
Take on bigger challenges and drive more progress by empowering greater participation by our community, and increasing the scale of investment in our mission.
Priority 1
Optimize Care and Support
Our work to date has contributed to improved health outcomes, quality of life, and peace of mind for many thousands of patients and caregivers, while also building knowledge, capabilities, and relationships needed to tackle remaining challenges facing our community.
Yet barriers remain that prevent too many patients from getting the care and support they need, and fragmented, hard-to-access medical data limits the ability of doctors to learn and iterate based on real-world care.
By 2030, we will address these barriers on two fronts: improving access to evidence-based care, and building the infrastructure needed for continuous care improvement.
Photo: Chordoma survivor Phineas with Dr. Schroeder
Toggle each header below for details on how we’ll pursue these objectives:
Key Outcomes of Priority 1
Updated treatment guidelines covering every stage of disease.
Better support for more patients around the world through enhanced patient navigation, new virtual tumor boards, an expanded network of survivorship care providers, and more localized educational resources.
New tools to enable more rapid learning from patient care.
Priority 2
Deliver Better Treatments
The most pressing medical need for chordoma patients is effective drug therapies for disease no longer controllable by surgery or radiation. Our work to date has yielded the first drugs that provide meaningful benefit to some patients with advanced disease, plus a growing pipeline of increasingly promising therapies on the horizon. It has also created a chordoma research ecosystem that enables rapid progress, with hundreds of investigators and companies now contributing to the field, a culture of collaboration, and extensive research-enabling infrastructure including CF Labs, which has dramatically increased the speed, efficiency, and feasibility of chordoma therapy development.
Yet better therapies are still urgently needed to provide greater benefit to more patients for a longer duration.
Thankfully, because of the milestones achieved to date, and a convergence of emerging drug-discovery technologies and therapeutic modalities, significant opportunities now exist to deliver markedly better treatment options on a timeline that can benefit patients alive today. By 2030, our goal is at least three new treatments that outperform those available today, while laying the foundation for even more powerful treatments to come.
We will achieve this by advancing the first brachyury-targeted drugs into clinical development, applying promising new therapeutic approaches with greater potential than those identified to date, and building the regulatory and clinical infrastructure needed to bring the first approved chordoma drug to patients.
Photo: CF Labs scientist Nindo Punturi
Toggle each header below for details on how we’ll pursue these objectives:
Key Outcomes of Priority 2
At least three brachyury drug discovery programs are ready to enter clinical development and the first patient is dosed in a brachyury-targeted clinical trial.
Ten new therapies enter clinical trials, with clinical proof of concept demonstrated for at least three.
Path created to the first approved chordoma drug: platform trial launched, regulatory guidance secured, and chordoma's first registrational trial enabled.
Priority 3
Achieve a New Level of Impact
The progress we seek to drive by 2030—significantly enhancing services for patients, improving care more quickly, delivering new effective therapies, and bringing the first brachyury-targeting drugs into clinical trials—will create an entirely new level of benefit for individuals affected by chordoma. It will also require a new level of participation in research and philanthropy by the chordoma community, and marshaling significantly more resources from a variety of sources.
To meet these needs, in the coming years we will work to foster greater patient agency, while doubling investment in our mission.
Photo: CF supporters Zach (chordoma survivor) and Lauren Martin visit CF Labs
Toggle each header below for details on how we’ll pursue these objectives:
Key Outcomes of Priority 3
More patients engaged in giving or fundraising—increasing to 700 per year.
Enroll 300 patients in research through our Patient Registry, Biobank, and clinical trials.
Annual expenditures reach $12M, plus an average of $2M in additional resources leveraged from partner organizations.
Bring our shared vision to life
Progress depends on everyone in our community! Each person affected by chordoma brings resources, experiences, and strengths that are critical for our collective progress. Tell us how you’d like to engage, and we’ll connect you with opportunities that fit your interests and circumstances.
Executing Successfully
This plan represents a significant increase in the scope and complexity of our work. Making it a reality will require us to reach a new level of scale and capability, while upholding and deepening the qualities that have been core to our success: efficiency, nimbleness, drive, and deep care for our constituents.
On the team front, we’ll add capacity, expertise, and leadership via essential new staff roles, consultants, and volunteer Board members and advisors. We will also move toward closer integration of patient services, research, communications, and fundraising, strengthening cross-functional collaboration and building capacity across these areas in concert.
Operationally, we will continue to iterate how we work to drive ever-greater efficiency. In particular, we will maximally leverage technology, including agentic AI, to expand team capacity and enable staff to focus on activities that create the greatest impact. And we will rigorously maintain focus on our highest priorities by routinely tracking progress against 2030 targets and annual objectives, adjusting allocation of effort and resources as needed to stay on plan.
As we carry out this plan, we will report progress here. You can sign up for our newsletter for regular updates, too!
Photo: Longtime volunteer and late patient Sharon Berlan along with members of our Board and staff
What We Will Unlock
If we deliver on this plan, the experience of facing chordoma will be markedly changed by 2030. More patients will receive high quality care, informed by up-to-date guidelines and supported through a richer set of resources and services. Those whose tumors recur or spread will have a more robust toolbox of drug therapy options. Everyone affected by this disease will be able to look forward with greater hope knowing that the most advanced therapeutic modalities and technologies are being brought to bear to create even more effective treatment options, including those targeting brachyury.
The milestones we reach by 2030 will also create a springboard for even greater progress to come. A fully implemented platform trial will bring to clinical research a comparable level of nimbleness, speed, and efficiency that CF Labs has brought to preclinical research. Combined with the regulatory clarity we achieve, this will clear the way for the first drug approvals for chordoma and provide the incentive needed to motivate more substantial industry investment—coming at just the right time to enable needed funding for clinical development of emerging brachyury drugs. New knowledge generated about chordoma will open the door to applying emerging therapeutic modalities, and will likely point to new, more personalized ways to guide the use of systemic therapies.
The new knowledge, expanded capabilities, and broader base of support developed by implementing this plan will position us to drive progress at a scale and pace that were once only a dream for our community. And together, we will get much closer to our vision of a future in which everyone affected by chordoma can overcome the disease and live well.
Photo: Chordoma survivor Maggie Bates and son Patrick