Empowering Progress in GBM Advocacy
Breaking institutional barriers to unite patient willpower with global medical innovation.
I use my personal experience, knowledge and international network to help patients and families navigate the complex world of glioblastoma care. Through connections across Europe, the US and Asia, I help people explore treatment options that may not be routinely discussed or available within their local healthcare system.
My advocacy has two clear goals:
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Empower patients to explore all reasonable treatment options.
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Campaign for broader access and insurance coverage of evidence-based GBM treatments.
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Advocay in Action
As a patient advocate and keynote speaker, I work to improve access to evidence-based and innovative glioblastoma treatments. My goal is to empower patients, promote transparent and personalized care, and help ensure that effective treatments are not restricted by geography, policy or personal finances.
The Netherlands is a striking example. Tumor Treating Fields (TTFields/Optune Gio) are not routinely available or reimbursed for Dutch patients, despite randomized phase III evidence showing that adding TTFields to maintenance temozolomide significantly extends progression-free and overall survival in newly diagnosed glioblastoma. Patients who want this treatment must currently seek and fund it abroad.
I want to help change this by raising awareness, connecting patients and experts, and advocating for more evidence-based treatment options to become accessible through the insured healthcare system. My mission is simple: heal myself, help others and change the system.
16 April 2026
0xfefe_0003: Debugging Healthcare: How I Took Over My Own Glioblastoma Treatment
Wolbodo, Delft, Netherlands
Presenting insights from a proactive GBM protocol and the necessity for scalable, personalized medical frameworks.
8 July 2026
Keysight Riscure: Personal presentation: Jasiek’s health journey.
Delft, Netherlands
Personal story on navigating GBM treatment, the challenges and possibilities, and concrete ways to improve your odds of survival.
24-27 SEPTEMBER 2026
Attending EANO 2026
Rome, Italy
Attending the EANO 2026 conference in Rome to talk with scientists, dokters and pharma, share my vision on GBM treatment, and follow the latest scientific developments.
Turning Evidence into Access
Promising research only helps patients when effective treatments become available and are affordable. I want to bring patients, healthcare professionals, patient organizations, policymakers and industry together to accelerate the translation of scientific evidence into accessible GBM care.
My approach includes:
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Mobilizing patients: Connecting and empowering patients to build a strong collective voice and advocate for broader treatment choices within insured healthcare.
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Engaging patient organizations: Encouraging organizations and patient representatives to advocate not only for research, but also for timely access, reimbursement and affordability.
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Working with policymakers and insurers: Presenting scientific evidence and patient experiences to challenge barriers and support the reimbursement of evidence-based treatments.
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Collaborating with neuro-oncologists: Encouraging clinicians and professional bodies to actively support the evaluation, adoption and reimbursement of treatments with convincing evidence.
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Engaging pharmaceutical and medical-technology companies: Seeking their support for regulatory and reimbursement pathways, responsible pricing and patient-access programmes.
