Resources

Learning as much as you can about your brain tumor diagnosis, treatment options and support can help you take active measures to improve your care.

The American Brain Tumor Association provides extensive information about brain tumors and treatments. Their “Brain Tumor Information” page is a great place to start for those looking to learn more about their diagnosis and about possible therapies.


The Musella Foundation is focused on helping patients get connected to clinical trials, helping people with financial need with cancer care, and collecting patient-reported outcomes into a “virtual trials” database.


The National Brain Tumor Society provides information specifically geared towards the caregiver, provides information about employment laws and financial considerations, and questions to ask your doctor. They have also created an extensive list of helpful resources for brain tumor patients.


Cancer.net provides a comprehensive variety of information from risk factors to coping with side effects to statistics.


Frankly Speaking About Cancer: Brain Tumors is a resource published by the Cancer Support Community and the National Brain Tumor Society, in partnership with Accelerate Brain Cancer Cure and the Musella Foundation. The booklet provides comprehensive information on brain tumors (both malignant and non-malignant), treatment options, tips and questions to help communication with your health care team, resources for emotional support, and a listing of resources to help you and your family address the cost of cancer care.


The National Coalition for Cancer Survivorship’s Know Yourself worksheet helps gauge what is important to you and what to ask your doctors.


Faster Cures has a publication specifically about glioblastoma multiforme which will be satisfying to the science-minded patient. It explains scientific in detail both the disease and the treatment options.


The International Brain Tumor Alliance sends out an informative newsletter about brain cancer research going on around the world.


Stupid Cancer is a specialized resource for young people with cancer, providing key information on things like fertility and scholarships, as well as serving as connecting young cancer fighters to one another.


ClinicalTrials.gov is the go-to place to find information about clinical trials. It is not the easiest to use for most patients, but can sometimes be essential.


HealthCare.gov can be an essential resource for those in need of health insurance. It is now illegal for insurance companies to turn you away because you have cancer. Healthcare.gov can help you find the health insurance you need for your treatment.


PubMed is a great resource for people who want to learn about the latest in brain cancer research. It is a search engine for scientific papers, so it is best for patients who have some academic or scientific experience.

 

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