Support - NCI-CONNECTions
News about rare brain and spine tumor support organizations and resources. Includes articles on non-profit groups who connect those impacted and available NCI resources.
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Using Social Media to Educate and Engage the Brain and Spine Tumor CommunityA data analysis shows the value of the @NIHBrainTumor X (formerly Twitter) account as a resource for patients, caregivers, and advocates, as well as neuro-oncology providers and researchers.
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A Celebration of Hope for the Brain and Spine Tumor CommunityNCI-CONNECT raised awareness for ependymoma and honored patients, care partners, and medical professionals in a butterfly release event at NIH.
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2024 Brain Tumor Awareness Month GuideThis May, share information about brain and spine tumors to raise awareness, educate the community, and help people living with these cancers.
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Bringing the Patient, Caregiver, and Advocate Voice to Clinicians and Researchers to Better Understand SurvivorshipAdam Hayden and Kimberly Wallgren visited NCI to share their invaluable perspectives on survivorship and person-centered care in neuro-oncology.
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NCI Neuro-Oncology Branch Hosts Art Exhibition in Honor of Brain Tumor Awareness MonthBranch members shared poems, paintings, sculptures, and other works of art to display their creativity and build connections within the brain tumor community.
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Supportive Services to Help People with Brain and Spine Tumors Live FullyNIH Clinical Center Social Worker Sylvia Stearn provides supportive counseling and resources to help patients with brain and spine tumors cope and transition to their new normal.
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Providing and Advancing Survivorship Care in Neuro-OncologyDr. Heather Leeper is involved in every aspect of a patient’s illness experience. She shares how she is advancing survivorship care in neuro-oncology.
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Brain and Spine Tumor Patient and Caregiver Support ResourcesNon-profit patient advocacy organizations help to educate and support individuals with a brain or spine tumor diagnosis.
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Family Support during Spine Tumor DiagnosisAndrea’s two children, husband, and parents have all been affected by her ependymoma diagnosis. She shares how they adjusted and provided support.
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A Serendipitous Connection Helps Improve Patient Communications and OutreachKristin Odom and Brittany Cordeiro help NCI-CONNECT reach people with rare brain and spine tumors through online education and advocacy partnerships.