Patient Support Organizations and Info Resources
Adult Patients
American Brain Tumor Association
The mission of the American Brain Tumor Association is to advance the understanding and treatment of brain tumors. With the goals of improving, extending and, ultimately, saving the lives of those impacted by a brain tumor diagnosis. They do this through interactions and engagements with brain tumor patients and their families, collaborations with allied groups and organizations, and the funding of brain tumor research.
ASCO - Living with Cancer
Cancer.Net provides timely, comprehensive information to help patients and families make informed health care decisions. The American Society of Clinical Oncology’s (ASCO) patient information website brings the expertise and resources of ASCO to people living with cancer and those who care for and care about them. Well-informed patients are their own best advocates and invaluable partners for physicians.
braintrust
Brainstrust is a UK based brain cancer charity, dedicated to improving clinical care for brain tumour sufferers and providing coordinated support in their search for treatment. They provide support and advice at the point of diagnosis and beyond, by updating treatment, improving care and, ultimately, saving lives.
Brain Tumour Charity
The Brain Tumour Charity, located in the UK, funds pioneering research to find new treatments, improve understanding, increase survival rates and come closer to a cure. They raise awareness of the symptoms and effects of brain tumours, reduce diagnosis times and make a difference every day to the lives of people with a brain tumour and their families. They also provide support and information for anyone affected to improve quality of life.
Cancer Support Community
The Cancer Support Community is an international non-profit dedicated to providing support, education and hope to people affected by cancer. CSC offers a menu of personalized services and education for all people affected by cancer. Its global network brings the highest quality cancer support to the millions of people touched by cancer. These support services are available through a network of professionally-led community-based centers, hospitals, community oncology practices and online, so that no one has to face cancer alone.
Clinical Trials and Noteworthy Treatment
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.
International Brain Tumor Alliance
Alliance of the support, advocacy and information groups for brain tumor patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumors.
National Brain Tumor Society
National Brain Tumor Society brings together the best in brain tumor research and supportive patient services. They offer hope to patients, families, and caregivers during every stage of the treatment journey. NBTS invests wisely and strategically in innovative research that will lead to advances and ultimately to a cure.
National Cancer Institute Physicians Data Query
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.
PubMed
PubMed comprises more than 23 million citations for biomedical literature from MEDLINE, life science journals, and online books.
Spinal Cord Tumour Forum
The Spinal Cord Tumour Forum is a support group based in the UK for people who have had, or whose lives have been affected by, benign spinal cord tumours. Even though they are benign these tumours can cause significant damage. Our group was created and is run by spinal cord tumour sufferers. The website contains a forum plus information on spinal cord tumours, personal stories and news updates. They also hold meetings twice a year in London.
Pediatric Patients
Children’s Brain Tumor Foundation
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.
Pediatric Brain Tumor Foundation
The Pediatric Brain Tumor Foundation (PBTF) is a 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.
Pacific Pediatric Neuro-Oncology Consortium
The Pacific Pediatric Neuro-Oncology Consortium (PNOC) is an international scientific consortium led by Dr. Sabine Mueller and Dr. Michael Prados with centers within the United States, Europe, Asia and Australia. The primary goal of PNOC is to find a cure for pediatric brain cancers. We believe strongly in collaborating with those who are passionate, creative, and collaborative. Creating specific Research Groups to focus on a certain disease type or modality, such as imaging, will help our consortium as a whole develop innovative, patient-centric treatment plans. Visit our website for more information on PNOC and PNOC’s Ependymoma Research Group. To learn more about PNOC Foundation or support Ependymoma research please click here.
Please note that the content on the page above is provided solely as an informational resource for patients with ependymoma, their family members and caregivers. These organizations are not associated with the CERN Foundation and we are not responsible for the content on these sites. The CERN Foundation is always interested in hearing about additional resources and groups seeking to improve the care and treatment of patients with ependymoma. If you would like to suggest a resource to be added to this page, please contact us.