Chordoma Foundation

National Cancer Institute to host second annual pediatric and young adult chordoma clinic

Due to the current situation with COVID-19, the in-person chordoma clinic at the National Institutes of Health (NIH) has been postponed to fall 2020. A virtual clinic will be held on April 29-30, 2020, for a few patients in urgent need who were planning to attend the in-person clinic. We will post more information on the fall clinic when it is available and you can contact us at support@chordoma.org with any questions.

We’re delighted to share that, for the second year in a row, the National Cancer Institute (NCI) is inviting pediatric and young adult patients to participate in a chordoma-specific clinic at the National Institutes of Health (NIH) Clinical Center in Bethesda, Maryland. The clinic will take place on April 29 – May 1, 2020.

MyPART Network​As it was in 2019, the clinic is being coordinated by the NCI’s My Pediatric and Adult Rare Tumor (MyPART) network, which focuses on accelerating the translation of potential new therapies for rare tumors by bringing together patients, clinicians, researchers, and patient advocates.

During the clinic, participants will have the opportunity to meet with several of the most experienced doctors in the chordoma field, all in one place. Each patient and their accompanying family members will sit down with chordoma experts – including oncologists, neurologists, genetic counselors, psychologists, pain management experts, endocrinologists, nutritionists, radiation oncologists, otolaryngologists, and surgeons – to discuss their medical history and receive personalized feedback about potential treatment and care options moving forward. 

In addition to meeting with each of the chordoma experts onsite, clinic participants will also have time to connect with each other at dinners and social events.

The schedule for this year’s clinic is as follows:

  • Wednesday, April 29: Welcome dinner for participating patients and families
  • Thursday, April 30: Clinical evaluations and personalized meetings with clinical experts followed by dinner social
  • Friday, May 1: Closing meeting with NCI specialists and all participants

Last year’s event was truly meaningful for all participants, and we look forward to welcoming a new group of attendees this year. 

Interested in participating?

Eligibility. The clinic is designed to help pediatric and young adult patients with poorly differentiated, cranio-cervical junction, spinal, and/or skull base chordomas who have more than one potential treatment pathway to choose from and who would benefit from the input of an expert, multidisciplinary team in making the best decision possible.

Travel. Please discuss with the NIH team what may be covered in terms of travel and lodging. Patients age 29 and younger and their families are invited to stay onsite at the Children’s Inn at NIH – a vibrant, residential “place like home” for families with children participating in research studies at NIH – while older patients and accompanying family members will be offered some financial support for rooms at area hotels. Patients from outside the U.S. may be eligible to participate but should speak with the team at NIH about travel needs.

Contacts and deadline. Patients who wish to be considered for the upcoming clinic should contact the clinic coordinator, Maran Ilanchezhian, at maran.ilanchezhian@nih.gov, no later than March 21. You can also contact our Patient Navigators (support@chordoma.org) at any time with questions or for more information.

“We found the whole experience of the clinic to be positive. It was wonderful to sit with neuro-oncology, endocrine, and genetic specialists and be able to discuss [our daughter]. We had many questions answered and [learned] some things to ask our doctors back at home.”

Carolyn Laney
Mother of chordoma patient Neve (8 years old) who attended the chordoma clinic in 2019



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