Chordoma Foundation

National Cancer Institute to host a pediatric and young adult chordoma clinic on April 16-18

We are thrilled to share an upcoming opportunity for pediatric and young adult patients – up to age 39 – to participate in a chordoma-specific clinic at the National Cancer Institute (NCI) in Bethesda, Maryland, on April 16-18.

This clinic is being hosted by the National Cancer Institute (NCI), the federal government’s principal agency for cancer research and training. Specifically, it is coordinated through the MyPART network of NCI’s Rare Tumors Initiative (RTI) – which focuses on accelerating the translation of potential new therapies for rare tumors by bringing together patients, clinicians, researchers, and patient advocates.

During this two-day clinic, leading chordoma experts from around the country will travel to the NIH Clinical Center in Bethesda to evaluate patients, offering a unique opportunity for participating individuals and families to meet with several of the most experienced doctors in our field all in one place. In addition to meeting with each of the onsite chordoma experts, clinic participants will also have time to connect with one other.

This is the first of what we hope will be many NIH chordoma clinics and we look forward to helping make it as valuable an experience as possible for every patient, family, and doctor who participates.


The clinic is designed to help pediatric and young adult patients – 39 years and younger – who have more than one potential treatment pathway to choose from, and who would benefit from the input of an experienced, multidisciplinary team in making the best decision possible.


NIH will cover the cost of both travel and lodging for all participants within the U.S. Patients from outside the U.S. may be eligible to participate but will need to speak with the team at NIH.


If you are interested in participating – for yourself or your child – talk with your doctors or contact with any questions or for more information.

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