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2019 World Summit of Brain Tumor Patient Advocates


NCI-CONNECT partners with non-profit organizations who share a common concern for improving the outcomes of adults with rare central nervous system (CNS) tumors through awareness and education. 

What Does It Mean to Be an NCI-CONNECT Partner?

Partners are non-profit groups that work with NCI-CONNECT to identify and engage adults with select rare CNS tumors by disseminating information about clinical trials and new approaches to improve care and treatment.

Why Partner with NCI-CONNECT?

All primary CNS cancers are rare. They account for less than two percent of all cancers diagnosed each year in the United States. NCI-CONNECT focuses on select tumor types, each with less than 2,000 people diagnosed per year in the United States.

The low incidence rates of these CNS cancers mean patients and researchers face unique challenges. Patients struggle to find expert care and treatments. At the same time, the cancer research community struggles to identify enough patients to conduct meaningful research. 

NCI-CONNECT seeks to address these challenges and unmet needs by connecting patients, providers, and advocates in a collaborative network with a harmonized mission. This means developing partnerships with non-profits that advocate for people living with brain and spine tumors through education and awareness. Together, we can have a great impact on the progress of clinical care and research. 

Ready to Be Our Partner? 

As part of the Rare Tumor Patient Engagement Network, NCI-CONNECT has developed a memorandum of understanding (MOU) that outlines a framework of reciprocal cooperation. The MOU helps NCI-CONNECT and partner organizations reach their goals of improving the outcomes of patients with select rare tumors—as well as identifying and engaging those patients through information dissemination and education.

A partner organization will: 

  • Certify that it is a non-profit organization 
  • Have goals that relate to education, awareness, or support for patients with rare CNS tumors 
  • Use its own capabilities, networks, and resources to disseminate information provided by NCI-CONNECT 
  • Link to NCI-CONNECT information from its website, newsletter, and social media accounts 
  • Share NCI-CONNECT clinical trials, publications, and educational information with its community 
  • Effectively communicate with NCI-CONNECT 
  • Be a collaborative and collegial member of the NCI-CONNECT partnership network 


  • Provide all necessary information, tools, and resources 
  • Provide access to its research and clinical experts 
  • Invite partners to its educational workshops 
  • Provide partners an NCI-CONNECT membership badge 
  • Effectively communicate with partners 
  • Be a collaborative and collegial partner 

The first step to becoming an NCI-CONNECT partner is downloading our partner application. Send your completed application to

Who Are Our Current NCI-CONNECT Partners?

NCI-CONNECT is proud to partner with the following non-profit brain and spine tumor organizations, which are committed to raising awareness and educating patients with rare CNS tumors. 


Contact us at or 240-760-6530.

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