The Children’s Inn is proud to have hosted the recent 2018 annual Pediatric and Wildtype Gastrointestinal Stromal Tumor (GIST) Clinic at NIH. The clinic brings together children and adults affected by this rare gastrointestinal cancer with NIH researchers in an effort to help drive insight into the illness and devise new treatments.
Organized by the National Cancer Institute (NCI), the three-day event allowed pediatric patients to meet a wide variety of GIST experts, including geneticists, medical oncologists, pediatric oncologists and pediatric surgeons as well as multidisciplinary practitioners who specialize in pain management, nutrition and psychosocial care. The natural history information and clinical samples, when available, gathered by clinicians are critical tools to improve the knowledge about the biology of this disease – and to benefit patients worldwide. GIST patients also had the chance to interact with active advocacy groups.
“I personally believe that one of the unique aspects of the clinic is that it was immediately embraced by patients and supported by the advocacy community,” says Fernanda Arnaldez, M.D., a Senior Investigator, Cancer Therapy Evaluation Program, NCI and Clinical Director of the GIST Clinic. “It is very rewarding for all of us who participate to see that we really have a positive impact, even when no definitive curative pharmacologic therapy has been developed yet. We have been able to better understand the mechanisms involved in disease biology and progression as well as critical genetic features of this disease. This knowledge has allowed us to influence quality of life and care, for instance, in terms of surgical management. SDH-deficient GIST is a very rare disease, and this clinic gives testimony how NIH can give back to the community living up to its mission.”
The clinic also provides patients with the unique chance to meet other patients with the same rare illness.
For more information about the GIST clinic, visit their website.
Watch the GIST clinic’s Facebook Live event: