standard-title NCI-CONNECT Partnership The EndBrainCancer Initiative is proud to partner with NCI-CONNECT, a program of the National Cancer Institute to serve patients with rare CNS cancers.

NCI-CONNECT Partnership

The EndBrainCancer Initiative is proud to partner with NCI-CONNECT, a program of the National Cancer Institute to serve patients with rare CNS cancers.

Providing Direct Connection for Patients with Rare CNS Cancers

EBCI has partnered with NCI-CONNECT to facilitate engagement with patients with rare CNS tumors (including various forms of brain cancer) and to advance research. 

The program aims to advance the understanding of rare adult central nervous system (CNS) cancers by establishing and fostering patient-advocacy-provider partnerships and networks to improve access as well as approaches to care and treatment. The EBCI partnership with NCI-CONNECT facilitates engagement with patients with select rare brain tumors. This education and placement will become an expanded feature of the EBCI’s “Direct Connect” Program facilitated by patient navigators. EBCI and its navigators will provide specific educational and clinical trial information to patients and assist them, depending on the situation, with placement for treatment at the NCI Neuro-Oncology Branch at the NIH or an associated Brain Tumor Trials Collaborative (BTTC) center, or refer to the Rare Tumor Patient Engagement Network.

Primary CNS cancers are tumors that start in the brain and spinal cord. They account for less than 2% of all cancers diagnosed a year in the United States, with over 130 different types. Although all primary adult CNS tumors can be considered rare, The low incident rate of these 12 tumors (listed at left) means patients and researchers face unique challenges. Patients struggle to find expert care and treatments. Researchers have limited resources to study the disease and develop new therapies. NCI-CONNECT was developed to address these challenges and unmet needs by connecting patients, providers, researchers and community organizations to work in partnership.

RARE CNS Cancers Focused on by NCI-CONNECT
  • Atypical Teratoid Rhabdoid Tumor (ATRT)
  • Brainstem and Midline Gliomas
  • Choroid Plexus Tumors
  • Ependymoma
  • Gliomatosis Cerebri
  • Medulloblastoma
  • Meningioma (High Grade)
  • Oligodendroglioma / Anaplastic Oligodendroglioma
  • Pineal Region Tumors
  • Pleomorphic Xanthroastrocytoma / Anaplastic Pleomorphic Xanthroastrocytoma
  • PNET (Supratentorial Embryonal Tumor)
  • Primary CNS Sarcoma / Secondary CNS Sarcoma (Gliosarcoma)