Launch of Global Bill of Rights for Glioblastoma Patients
The new Glioblastoma Bill of Rights, an initiative of the nonprofit OurBrainBank, will be launched on Glioblastoma Awareness Day, July 22nd 2020.
This is a global program supported by major cancer nonprofits, including the International Brain Tumour Alliance, the American Brain Tumor Association and the National Brain Tumor Society in the US, the Tessa Jowell Foundation in the UK, and the Chris O’Brien Lifehouse in Australia.
Glioblastoma (GBM) is an aggressive, deadly brain tumor with no cure. The current standard of care is failing patients. The GBM Bill of Rights was crafted from the results of a 2019 survey taken by 400+ GBM patients and caregivers. It includes the right to: personalized care, genetic testing, a second opinion, experimental trials and treatments, psychological support, money-blind treatment, fast-tracked MRI results, best end-of-life care, and more.
OurBrainBank founder Jessica Morris, living with GBM, said, “The GBM Bill of Rights is a practical and aspirational tool for all of us. Empowered to demand these rights, we have the ability to improve quality of life and outcomes, and to move the needle on this devastating disease. This is a roadmap to patient power and a brighter future.”
NOTE TO EDITORS
OurBrainBank is an innovative, patient-led movement designed to move glioblastoma from terminal to treatable, powered by patients. Its key tool is a free mobile phone app that patients or caregivers can use to track symptoms, share data with clinicians, and donate data to medical research as part of an ethics-approved study. It is designed by, for, and with people with glioblastoma. It is available in the US, UK and Australia.
Founder Jessica Morris created OurBrainBank after being diagnosed with glioblastoma in January 2016.
Nonprofit Supporters of the GBM Bill of Rights
American Brain Tumor Association, Brain Cancer Project of Count Me In, Brain Donor Project, Brains for the Cure, Brain Tumor Network, Chris O’Brien Lifehouse, FundLove, GlioNET, Head for the Cure Foundation, Musella Foundation, National Brain Tumor Society, StacheStrong, Tessa Jowell Foundation
OurBrainBank Medical & Technical Advisors
Dr. Fabio Iwamoto, Deputy Director, Division of Neuro-Oncology, Columbia University, chairs our exceptional team of multi-disciplinary advisors from the National Institutes of Health, Dana-Farber, Memorial Sloan Kettering, Northwell Health, and other institutions.
More information: OurBrainBank.org
Hashtags: #GBMDay #GBMRights
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To download the OurBrainBank app in demonstration mode from the App Store or Google Play, please write firstname.lastname@example.org and request the registration code.
OurBrainBank is a registered nonprofit in the US and a registered charity in the UK.