2020 - NCI-CONNECTions
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World Summit of Brain Tumour Patient Advocates
Patient advocates from around the world gathered to share and discuss ways to improve outcomes for people with brain tumors through collaborations, knowledge and hope.
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Medulloblastoma Survivor Shares 5 Tips to Overcome a Rare Diagnosis
Ken is an 18-year rare tumor survivor. Although his treatments caused long-term side effects, he shares why he believes he is lucky to be alive and his hopeful advice to others.
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Collaborating Globally to Impact Outcomes for Brain and Spine Cancers
World-renowned neuro-oncology researchers and health care providers gathered virtually to share their work, the challenges and possible solutions to improve patient outcomes across central nervous system cancers.
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Coping with Loneliness and Creating New Traditions this Holiday Season
The holidays are a time to reflect and connect with your loved ones. During these uncertain times, make plans to create new holiday traditions.
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Meet the Specialist who Coordinates Your Care
Patient Care Coordinator Kristen Oshin shares how she provides comfort and guidance to people with brain and spine tumors and their caregivers. She guides them through appointments, answers follow-up questions and helps address any care concerns.
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Things to Know About Chemotherapy for a Brain Tumor
Giselle shares her treatment journey with five brain tumors over 23 years and the lifelong impact. She also shares important advice to manage chemotherapy and stay positive.
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How Studying the Natural History of Rare Cancers Improves Care
Research Nurse Sonja Crandon shares her work and the goals of the natural history study for people with brain and spine tumors and how it could discover new areas for research while helping patients.
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Deciding if and When to Have Surgery for a Spine Tumor
Beth discovered a tumor in the center of her spinal cord and the only treatment is surgery. She shares how she found expert care, support, and resources to prepare her for surgery.
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A Serendipitous Connection Helps Improve Patient Communications and Outreach
Kristin Odom and Brittany Cordeiro help NCI-CONNECT reach people with rare brain and spine tumors through online education and advocacy partnerships.
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Adult Medulloblastoma Workshop Report
Neuro-oncology experts from multiple disciplines met to discuss the scientific progress and challenges of treating medulloblastoma in adults and to find ways to collaborate to advance research and treatments.