OurBrainBank conducts patient and care-giver led research and data collection. In 2020, we developed the Glioblastoma Bill of Rights to ask that every person with GBM has access to the same quality of care regardless of geographical location or financial situation. Read more.

In 2022-23, we surveyed our community about these rights and found alarming results. Based on this, we determined that we needed a larger survey sample size plus input from doctors experienced with GBM to be able to raise noise about these healthcare disparities. We will recruit 500 patients and carers across the USA. 

Dr. Quinn Ostrum (Duke), Dr. Fabio Iwamoto (Columbia) and Dr. Lakshmi Nayak (Dana-Farber) led this project along with OurBrainBank. Survey Global Healthcare is managing the survey. We presented a poster at AONN+ and SNO in 2024.

We heard from people living with GBM, current caregivers, or those who lost a loved one within the last year or so (2023-4). View a presentation about the early results, use our toolkit to help us raise awareness and funding — Demand More!

Thank you, we are grateful for everyone who took the time to help others affected by GBM.