A new patient-centered call to action
Glioblastoma is a debilitating brain cancer with few treatment options. Patients deserve access to quality care and the agency to make informed decisions.

OurBrainBank, along with patients and fellow advocates, developed a GBM Bill of Rights: a set of concepts — some practical, some aspirational — to call for improving the standard of care and quality of life for GBM patients.

We want to know what are the biggest needs and priorities. Please tell us about your experiences. Patients and carers anywhere in the world are invited to respond.

We, the patients, have the right to...
Patient-centered care — an equal and collaborative patient/doctor relationship with personalized treatment that includes genomic and genetic testing, and tumor analysis.
Clear selection
A second opinion — offered at appropriate stages of diagnosis and treatments.
Clear selection
Clarity of information — up-to-date, accurate information about all potential treatment options; transparency about treatment centers and their outcomes.
Clear selection
Specialist care — access to a coordinated medical team — brain tumor specialist, neuro-surgeon, neuro-oncologist, radiation oncologist, and others.
Clear selection
Access to trials and experimental treatments — up-to-date, accurate information about new drugs, treatments, and clinical trials — including international options.
Clear selection
Psychological support — comprehensive psychological help for me and my carer.
Clear selection
Money-blind treatment — best treatment regardless of personal financial situation.
Clear selection
Fast-tracked treatments — quick MRI results and ER visits.
Clear selection
Patient-owned records — I own and can easily access my health records.
Clear selection
Patient-owned data — I can choose to donate my health data for research.
Clear selection
Information about the best end-of-life care — access to pain management, palliative care, and hospice.
Clear selection
Information about no-cost brain donation.
Clear selection
Please share your experiences — good and bad — as they pertain to one or more of these "rights." Example: "I'm lucky enough to get my MRI results right away" or "I have to wait two weeks for my MRI results." (Answers will be public, add your name and location if you like.)
Do you feel attitudes towards health and healthcare have changed because of the Covid-19 pandemic? (Answers will be public, add your name and location if you like.)
Anything else you would like to add for Glioblastoma Awareness Day July 22, 2020? This will be a day to learn, honor, act, and give in support of people affected by GBM. (Answers will be public, include your name and location if you like.)
Acknowledgments
We thank the many patients, carers, and fellow advocacy groups who helped us develop the GBM Bill of Rights. We hope that one day soon, GBM will be considered a chronic-but-treatable disease, rather than a terminal one. To see all responses, please click "See previous responses" on the acknowledgment screen, after submitting.

To learn more about:
Glioblastoma Awareness Day 2020: National Brain Tumor Society https://braintumor.org/take-action/gbm-awareness-day
OurBrainBank: Donate your data for GBM research https://OurBrainBank.org
Count Me In: The Brain Cancer Project: Donate your data for GBM research: https://joincountmein.org
The Brain Donor Project: Donate your brain for GBM research https://braindonorproject.org
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