Pediatric and Young Adult Chordoma Clinic

April 16-18, 2019

We are pleased to announce the inaugural Pediatric and Young Adult Chordoma Clinic at the National Institutes of Health (NIH). The study of rare diseases like chordoma is difficult. There are treatment trials for adult chordoma. However, children with chordoma may not be able to join the trials. Chordoma in children and young adults also presents differently and can have different mutations than adult chordoma. We believe that a gathering of patients and expert healthcare providers will generate a wealth of information to discover the underlying mechanisms behind chordoma and help discover new and more effective treatments.

The mission of the clinic is as follows:

  1. Bring together patients with Pediatric or Young Adult Chordoma with expert health care providers and patient advocates in the field
  2. Utilize the resources of the NIH to bridge shortcomings in basic and clinical research
  3. Provide storage of tumor samples, that can then be accessed by researchers throughout the world
  4. Disseminate new information in the field of Pediatric and Young Adult Chordoma
  5. Develop innovative treatment protocols

This clinic will take place from April 16-18 at the NIH in Bethesda, Maryland. Travel and lodging costs will be defrayed for residents of the United States. If you or your child is interested in participating in this clinic, please email for more information.


Chordoma Workshop Group

Chordoma Workshop Group, June 2018