Annual Chordoma Clinic Unites Patients, Families, Advocates, and Experts at NIH

MyPART hosted the fifth annual Pediatric and Young Adult Chordoma Clinic at the National Institutes of Health (NIH) Clinical Center (CC) on May 8-9^th. This clinic, one of several specialty clinics organized by MyPART, brings together patients, families, advocates, and disease experts. Experts confer with each other and provide clinical recommendations to a group of patients with the same rare cancer. Patients and families receive recommendations from experts from throughout the US all at once in one place and also have the opportunity to connect with other patients and families facing the same rare cancer.

Nearly two dozen chordoma experts (most of whom came from outside NIH) gathered at the CC (see photo at right, with NCI staff) to share their expertise with each other and with the ten chordoma patients who participated in this year’s clinic. The clinic also included a scientific session to discuss recent progress in chordoma research and clinical trials, and to brainstorm additional areas where more attention and collaborative efforts will be needed. “These specialty clinics are so important to not only the science/clinical community but also for the patients and their families. Through these clinics, we as physicians not only get to talk about how to drive the science forward and make progress, but we also have the opportunity to greatly impact patients’ lives,” said Dr. Mary Frances Wedekind Malone, the Principal Investigator of MyPART’s Natural History Study of Rare Solid Tumors.

MyPART advocacy partner, the Chordoma Foundation, participated throughout the clinic and sponsored a pizza dinner at the Children’s Inn for all clinic participants. Chordoma Foundation Executive Director, Josh Sommer, summed up the clinic by saying, “Several of the participants shared their gratitude and amazement that something so incredibly valuable is available to them for free. …[MyPART has] created something special, and we’re excited to see it continue to bear fruit going forward.”

Learn more about MyPART’s specialty clinics for rare cancers here.