NCI-CONNECTions: A Rare Brain and Spine Tumor Blog
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Primitive Neuro-Ectodermal Tumors (PNET)
Primitive Neuro-Ectodermal Tumors (PNET) are very rare, fast-growing tumors. PNET is a group of tumors that form in the ectoderm, the outermost layer of cells of an embryo in early development. Learn more about PNET.
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How Data Provides Hope to Rare CNS Tumor Patients
Learn how a not-for-profit organization studies the incidence, prevalence, and survival of people with rare brain and other central nervous system tumors to help facilitate research and raise awareness.
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Four-time PNET Survivor Shares Coping Tips
Dunamis was age four when she had her first surgery to remove a brain tumor. 15 years and four surgeries later, she finally received an accurate diagnosis: PNET. She shares how she positively copes and finds hope.
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Outcomes and Risk Project for Patients with Rare CNS Cancers
The project aims to improve our understanding of outcomes and risk factors related to the occurrence of rare CNS cancers. Research shows that certain risk factors may increase a person’s chances of developing cancer. If you take part in this study, you will complete a web-based survey and submit a saliva sample that will be used for genetic testing.
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 Impact of 12 Selected Rare CNS Tumors
NCI-CONNECT partnered with CBTRUS to study epidemiological data - the disease burden - of people with rare CNS tumors. Read the findings published in the Journal of Neuro-Oncology.
 CARES Group Meetings
During a NCI-CONNECT Clinic visit, you and your loved ones will have a CARES group meeting with a health and wellness expert. You will learn coping and wellness techniques and meet others with your same diagnosis.
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