If you are looking for further information about brain tumors, specifically ependymoma, please explore the following links. There are many brain tumor organizations that have a large amount of helpful information on common issues to all brain tumor patients, not just people with ependymoma. Please contact us if there are additional organizations that should be included to our list of resources.
Professional Organization Resources
Adult Patients
The Brain Tumor Action Network is a not-for-profit 501(c)(3) organization established to bring awareness to the general public about brain tumors and to educate and empower brain tumor survivors, their families and friends. They foster grassroots advocacy on federal and state legislative issues affecting brain tumor survivors, their families and friends by providing information on brain tumor-related public issues and effective advocacy.
The mission of the American Brain Tumor Association is, “to eliminate brain tumors through research and to meet the needs of brain tumor patients and their families.” It is a non-profit association that awards funding to research institutes around the world. The website allows you to pledge a donation directly as well as follow the groundbreaking research that the American Brain Tumor Association is helping to facilitate.
National Brain Tumor Society brings together the best in brain tumor research and supportive patient services. We offer hope to patients, families, and caregivers during every stage of the treatment journey. We invest wisely and strategically in innovative research that will lead to advances and ultimately to a cure.
Created by The Musella Foundation for Brain Tumor Research, virtualtrials.org is a non-profit organization that uses computer technology to organize brain tumor data and to provide a means of communication between brain tumor communities. Clinical Trials and Noteworthy Treatment for brain tumors was the first website of its kind to offer free video of brain tumor conferences and boasts an elite Medical Advisory Board.
The Physicians Data Query (PDQ) is the comprehensive cancer database of the National Cancer Institute, one of the most highly regarded sources of cancer information in the world. The database offers peer-reviewed summaries, prevention and screening, supportive care and alternative medicine options. It also houses over 23,000 clinical trials for cancer and a list of professionals that perform genetic services.
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Pediatric Patients
A non-profit organization founded in 1988 by friends and families of children with brain tumors and the physicians who dedicated their lives to a cure. The Children’s Brain Tumor Foundation provides dedicated information to families and has awarded over $5 million in grants to clinical research and quality of life funds around the world.
The Pediatric Brain Tumor Foundation (PBTF) is a 501(c)(3) non-profit charitable organization that seeks to find the cause of and cure for childhood brain tumors by supporting medical research. PBTF also looks to aid in detecting the early symptoms of brain cancer and treatment of childhood brain tumors and provide educational and emotional support for children and families affected by this life-threatening disease.
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Other Websites
- The Adult Ependymoma Online Support Group is comprised of survivors, caregivers, family members, friends or anyone else with an interest in ependymoma.
- Read Carol Welsh’s story for a real look into life with ependymoma from the perspective of a survivor.
- Check out an adult ependymoma survivor's website that looks at various aspects of treatment and moving on.
- Read Paige’s story to get an inside glimpse of what it’s like to have a child diagnosed with the rare cancer ependymoma.
- Pediatric Brain Tumors is a list of parents and other family members of child patients, survivors and angels of brain tumors.
- Ependyparents is a list of parents of ependymoma patients, survivors and angels of brain tumors.
- The Spinal Cord Tumor Association, Inc. is a not-for-profit organization formed by spinal cord tumor survivors for the purpose of supporting survivors and their families.
- Check out Melissa's well documented journey with ependymoma. Her courage is remarkable.
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Books
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