Photo: Gianna Yee [R] and family
When you’re diagnosed with chordoma, it’s important to understand what you’re facing, get expert treatment, and have support from others. But for thousands of patients outside the US, much of this has been hard to find: people were searching for answers in languages they don't speak, navigating local healthcare systems alone, and struggling to find peer support in their country.
Over the past few years, we've been working hard to close those gaps and invite more people around the world into our shared efforts to improve care and accelerate better treatments for everyone affected by this disease.
Already, patients like Abian from Spain are seeing the difference: “When I was diagnosed I felt very scared, not knowing what I was facing,” he says. “Having access to the Foundation’s resources in my language and country helped me and my doctors chart a course based on the best scientific evidence. It was undoubtedly a privilege.”
Educational resources in more languages
Finding clear, reliable information in your own language can mean the difference between feeling lost and knowing how to advocate for the best care. So in 2023, the launch of our new website included six languages in addition to English. Last year alone, our French, Italian, and Spanish pages were visited more than 70,000 times by people searching for answers about diagnosis, treatment options, and specialists.
More recently, thanks to a generous grant from the Lilly Foundation, we launched our first Asia-focused effort for patients in India, Indonesia, and the Philippines. As part of this, we translated our Expert Recommendations booklets into Hindi, Indonesian, and Tagalog and got them into the hands of hundreds of patients and families — equipping them with practical, trustworthy guidance to make informed decisions about treatment.
Connection to local, expert care and treatment
Information is the first step, but patients also need help understanding options in their region and connecting with local doctors who have experience treating chordoma.
Our Patient Navigators communicate in multiple languages and have recently gained more experience helping international patients navigate country-specific healthcare systems. They also build relationships with chordoma-experienced clinicians worldwide, which means that when someone contacts us, we can point them to trusted doctors in their region. For example, as part of our recent efforts in Asia, our Navigators added more than 10 specialists each in India, Indonesia, and the Philippines to our Doctor Directory.
Our Navigators are aided “on the ground” by Ambassadors: volunteers who help others in their country navigate this disease. In addition to providing peer support, Ambassadors conduct research that’s led to dedicated pages for various countries with everything we know about finding experts and navigating treatment locally. They also address specific needs — for example, pushing to bring the first proton therapy center to Australia, while helping families navigate options abroad in the meantime when that therapy is recommended.
We now have 18 Ambassadors in Australia, Brazil, Canada, Israel, and seven European countries, and we’re so grateful for their dedication! If you'd like to become an Ambassador, let us know.
Our volunteer Ambassadors
Expanding access to clinical trials
When more patients can participate in clinical trials, we all get closer to better treatments. Last month, we enrolled our first international patient in our Clinical Trial Assistance Program, which helps with the travel costs that often block participation in trials. Expanding the program will help more patients access potentially life-changing treatments, generate more diverse trial data, and strengthen collaborations with our research partners worldwide.
Finding community
Navigating chordoma can feel lonely, especially when you're one of the few people in your country facing this disease. That’s why we’ve added live virtual support groups and online forums in multiple countries and languages. These spaces let patients share what they’ve learned, ask questions in their native language, and connect with others who understand both the disease and their local healthcare system.
And our Chordoma Community Map makes this global community visible, helping people see where others are living with chordoma and feel less alone. Add your pin today so others in your region can see you, too!
We’d also love to host you at our International Chordoma Community Conference in Boston, Massachusetts, on September 18-20, 2026, where patients and families from around the world can connect in person and hear from leading experts about the latest research and treatment advances. (And if you’re near Australia, we hope to see you even sooner at our Chordoma Community Day this February!)
Inviting worldwide participation
Gifts of all sizes, from all corners of the world, are a vital force behind everything we do. Perseverance Pledges — ongoing monthly donations that help us support more people in more places and improve treatment options for patients everywhere — are a particularly important giving option.
Fabio, a patient and Perseverance Pledge donor in Italy, told us that while living with chordoma is difficult, he knows that determination and action from patients and their loved ones will eventually help everyone overcome this disease. Fabio donates monthly, he says, because “every step forward, every discovery, is a victory for all of us.”
Waldek and Lucyna, Poland