Brain Tumor - Education
American Brain Tumor Association
Brain tumor dictionary and printable information on brain tumors. Listing of support groups, pen-pal program, information on treatment facilities, sponsors regional town hall meetings, social worker on staff, symposium offered twice/year and a tri-annual newsletter:
Brain Surgery Information Center
Educational information regarding brain tumor and neurosurgery
Cancer Net
Provides educational information about survivorship, research, cancer care and many other topics.
https://www.cancer.net/cancer-types/brain-tumor
Central Brain Tumor Registry of the United States
A registry of brain tumors in the United States. There are many publications, a glossary and fact sheets with statistics and incidences of brain tumors in the United States.
Lash and Associates Publishing
Primary focus is the neurological, psychological, communicative, psychosocial and educational impact of brain injuries among children youth and young adults. Provides practical, informative, and affordable materials for families, survivors, health care providers.
National Brain Tumor Society
Publications about brain tumors, including: facts about symptoms, treatments, and clinical trials, and helpful resources and tools for patients and caregivers. They also provide a quarterly newsletter, information hotline, a resource guide for pediatric patients and a list of support groups. www.blog.braintumor.org has information on brain tumors, such as fact sheets, what does metabolism have to do with tumors, etc.
617-924-9997 www.braintumor.org
Pediatric Brain Tumor Consortium
Provides summaries for patients and families on all the current clinical trials as well as contact information for institutions. Provides a financial emergency assistance fund, called The Butterfly Fund.
Understanding the Journey, A Parent’s Guide to DIPG
A 368-page comprehensive book that guides the family whose child has been diagnosed with a diffuse intrinsic pontine glioma through this difficult diagnosis. Chapters are written by pediatric neuro-oncology experts and cover all aspects of treating a child with a DIPG, including: diagnosis, imaging, pontine function and anatomy, steroid treatment, radiation therapy, radio sensitizers, surgery, chemotherapy and biologics.
