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Patient advocate Kathy Oliver sitting at a table speaking into a microphone

Kathy Oliver of the International Brain Tumour Alliance speaking at the 2018 NCI-CONNECT Oligodendroglioma Workshop

Credit: NCI-CONNECT

Use the following resources to find support and connect with others affected by a brain or spine tumor.

American Brain Tumor Association 

The mission of the American Brain Tumor Association (ABTA) is to advance the understanding and treatment of brain tumors to improve, extend, and save the lives of those affected by a brain tumor diagnosis. The ABTA does this through interacting and engaging with brain tumor patients and their families, collaborating with allied groups and organizations, and funding brain tumor research. 

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Brains for the Cure 

Brains for the Cure (BFTC) is a program built for patients and caregivers. It is an online navigator to help them understand, manage, and cope with all the twists and turns of a brain tumor diagnosis. It includes timely articles from the scientific and personal perspective; more than 200 videos of physicians, caregivers, and patients sharing their stories; and resources to help their treatment journey. 

Brain Tumor Network 

The Brain Tumor Network (BTN) is a navigation resource for adult patients and caregivers in the United States seeking information about brain tumor treatment options, including clinical trials. This unbiased resource is provided at no cost to patients, caregivers, and health care professionals. 

Collaborative Ependymoma Research Network Foundation 

The Collaborative Ependymoma Research Network (CERN) Foundation, a program of the National Brain Tumor Society (NBTS), is a valuable resource for those affected by ependymoma. The foundation is committed to improving the care and outcomes of people with ependymomas through community support and research efforts. The CERN website is dedicated to informing patients and caregivers about treatment, diagnosis, clinical trials, symptom management, and tumor recurrence. It also includes community outreach and support programs, as well as patient stories. 

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EndBrainCancer Initiative 

The EndBrainCancer Initiative (EBCI) enhances patient outcomes by expanding FDA-approved treatment modalities and fueling research in the pharma/bio/life sciences, as well as the device and diagnostic industries. EBCI aims to close the existing gap between initial diagnosis and immediate, expanded access to specialists, researchers, advanced and innovative treatments, clinical trials, and critical care. Its goal is to improve patient outcomes through updating and improving the World Health Organization (WHO) and National Comprehensive Cancer Network (NCCN) guidelines, in addition to clinical practices related to standard of care for brain cancer patients. 

Glioma-Center Foundation 

The Glioma-Center Foundation (GCF) is the first and only brain tumor organization in Poland. The foundation aims to, among other things, facilitate access to consultations and innovative procedures, integrate activities, and provide knowledge about new medical achievements. 

International Brain Tumour Alliance 

The International Brain Tumour Alliance (IBTA) brings together experience and expertise from all over the world with the aim of enhancing the well-being and quality of life of brain tumor patients and their families. The IBTA is based in the United Kingdom, with community advisors in Australia, New Zealand, Canada, and the United States. 

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National Brain Tumor Society 

The National Brain Tumor Society (NBTS) brings together the best in brain tumor research and supportive patient services. The NBTS offers hope to patients, families, and caregivers during every stage of the treatment journey. It invests wisely and strategically in innovative research that will lead to advances—and ultimately a cure—for people living with a brain tumor. 

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Oligo Nation 

Oligo Nation is driven by the urgent need for new oligodendroglioma treatments; there hasn’t been a new treatment approved in 20 years. Oligo Nation works with and supports families who want to overcome this disease, in addition to raising money for medical research. 

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NCI-CONNECT is not responsible for the content on these organizations' websites.

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