Glioblastoma Bill of Rights
Eight practical rights to help patients and care partners ask questions, understand options, and advocate for high-quality care.
We the patients have the right to:
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Personalized care plan
A custom plan developed before initial treatment — tailored to you and your tumor. Discussion of all options and every FDA-approved treatment (including Tumor Treating Fields).
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Timely tumor testing & storage
Tumor biomarker testing (individual makeup, including mutations) before treatment begins. Fast-tracked analysis. Tissue from initial surgery frozen for potential use.
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Second opinion
A second opinion before treatment and again at any point. A good doctor will welcome this and a good healthcare system will enable it.
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Access to clinical trials
Up-to-date, accurate, and personalized information about emerging treatments. Help with related travel and expenses. Clinical trials offered at diagnosis and if the tumor recurs.
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Specialist care
Tumor removed by a neuro-surgeon. Treatment guided by a neuro-oncologist. Access to specialists like radiation oncologists and neuro-pathologists. Coordinated and communicative care team.
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Quality of life support
Psychological help (care partners too) and support groups. Palliative care — to ensure good quality of life, minimize suffering, and manage pain. Hospice care — comfort rather than curative treatment (when appropriate)
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Affordable high quality care
Access to affordable and effective treatment. Transparency about outcomes. Help with insurance, benefits, housing, and transportation. Information about workplace rights (short and long-term disability, accommodations).
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Easy access to records and ability to donate data
Ease in obtaining health records — including fast-tracked MRI results — and transporting own data. Ability to donate data and tissue for research.
Download the checklist to print and take to your appointments.
Built from patients’ experiences
In the lead-up to the first Glioblastoma Awareness Day 2019, OurBrainBank surveyed hundreds of GBM patients and carers about their experiences. OurBrainBank, with the help of fellow advocates, used the results to craft a set of concepts — some practical, some aspirational — to call for improving the standard of care and quality of life of GBM patients.
The original Bill of Rights launched in 2020. It was developed by OurBrainBank staff and members of our community, with input from nonprofit partners and medical advisors.
What patients told us shaped the revision
A separate national survey of 525 patients and care partners highlighted continuing gaps in care. Those findings informed the May 2026 revision and point to questions patients can raise with their care teams.
66%were never offered a clinical trial
Ask your care teamWhich clinical trials could be appropriate for me now or if my tumor returns?
54%reported no discussion of a second opinion
Ask your care teamHow can I arrange a second opinion before treatment or when my options change?
69%received no information about tissue storage
Ask your care teamWas tissue from my surgery stored, and how can I find out whether it is available?
34%were not informed that tumor testing occurred
Ask your care teamWhat testing was done on my tumor, and can we review the results together?
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