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Patient Resource Center

Welcome to the Patient Resource Center

This section of our website is designed with the intent of making you a Rockstar advocate as you go through your own unique brain tumor and survivorship journey. We call it a “journey” because this is typically a long path with many stages, with each stage having its own challenges and information needs.

To meet these challenges, we have designed patient materials with you in mind. Each fact sheet or video contains the basic information you need to bone up quickly on this topic. Some contain worksheets for planning or note taking. We have also included links to other websites as appropriate.
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Medicare Coverage for Brain Tumors

Living with the diagnosis and treatment of a brain tumor is an extremely difficult and challenging task for patients and their families. This fact sheet will help you understand what you may expect. It also provides a number of strategies which can help you cope with the challenges.
View Fact Sheet
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10 Vital Questions Video

The EndBrainCancer Initiative | Chris Elliott Fund shares the top 10 questions brain tumor patients should ask their doctor after they have been diagnosed with a brain tumor.

You will need to make your own treatment choices and information is key. Take charge and learn to advocate for your own health care.
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Top 10 Questions and Crucial Conversations to IMMEDIATELY ASK Your Doctor When Faced with a Brain Tumor

These questions are vital to your life. It is so important to ask the right questions and get straight answers as soon as possible in the process. This fact sheet will equip you to obtain the very vital facts related to your own condition and the experience of your current medical team.
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Strategies for Coping: Mind, Emotions & Personality Changes

Living with the diagnosis and treatment of a brain tumor is an extremely difficult and challenging task for patients and their families. This fact sheet will help you understand what you may expect. It also provides a number of strategies which can help you cope with the challenges.
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What is Chemo Brain and Where Do I Go for Help?

If you are just starting treatment, you will want to understand the risks of your chemo treatment protocol on your ability to think clearly and process information. This fact sheet will help you make informed decisions about your treatment.
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Brain Tumor Patients: Ask your doctor about DNA sequencing and genetic testing

The EndBrainCancer Initiative | Chris Elliott Fund and Dellann Elliott Mydland share key reasons why DNA sequencing and genomic testing are critical early-on in a brain tumor or brain cancer patient’s journey.
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Medical Terms & Definitions Every Brain Tumor Patient Should Know

Becoming a rockstar health advocate does require a bit of a learning curve. Your medical team will likely use many terms with you that you may not understand. This glossary was developed to assist you so you have a better handle on the terminology, serving as a reference throughout your journey.
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My Social Support Network

When facing a brain cancer diagnosis, having a support network is very important. Often it can significantly affect outcomes, including long term survival. One recent study showed that lung cancer patients with strong social relationships and support systems had a 50% increased likelihood of survival compared to those who lacked these basic social ties. This […]
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Talking to Your Family & Friends About Your Brain Tumor

This fact sheet offers guidance and wisdom on how to communicate with your family and friends about your brain tumor. The first thing to realize is that you don’t have to personally tell everyone. You can get help…
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Online Resources

This fact sheet provides links to a wide array of brain cancer resources for patients, families, caregivers, & healthcare professionals.
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Why it is vital to be seen at a Brain Tumor Center and NCI Designated Cancer Centers?

Brain Tumor Centers and NCI Designated centers offer world class, state of the art programs in multi-disciplinary cancer research.
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Who is on my Integrated Support Team and what do they do?

You are not alone in your brain tumor diagnosis. Your Integrated Support Team provides emotional and support beyond the doctor’s office.
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Planning Your Doctor’s Consultation

Your doctor’s consultation is a vital step in the process of the journey. BE PREPARED! This guide will help you know who you may be meeting with, critical questions to ask and how to prepare.

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Glioblastoma: A Patient’s Guide

Glioblastoma (also known as glioblastoma multiform or GBM) is the highest grade glioma (grade IV) brain tumor. This easy-to-read resource covers what you need to know now about glioblastoma and your brain tumor. Link to Article

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Enhancing patient outcomes by expanding FDA-approved treatment modalities and fueling research in the pharma/bio/life sciences, device & diagnostic industries and by closing the existing GAP from initial diagnosis to IMMEDIATE AND EXPANDED ACCESS to specialists, researchers, advanced & innovative treatments, clinical trials and critical care with the ultimate goal of improving patient outcomes through updating and improving WHO & NCCN Guidelines and clinical practices related to Standard of Care for brain cancer patients.

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