Online Resources
for Patients, Families, Caregivers,
& Healthcare Professionals


Brain Tumor and Treatment Sites

  • American Brain Tumor Association (ABTA)
    • The ABTA is dedicated to funding brain tumor research and providing information and education on all tumor types and all age groups
  • CERN Foundation
    • The CERN Foundation is comprised of a dedicated group of scientists and adult and pediatric neuro-oncologists working to find new treatments for ependymoma, a type of brain tumor
  • Chemocare.com
    • ChemoCare.com is a website offering information on chemotherapy drugs, side effects from those drugs and resources for those undergoing chemotherapy treatment
  • International Brain Tumor Alliance (IBTA)
    • The International Brain Tumour Alliance (IBTA) is a global network founded in 2005 as a dynamic worldwide community for brain tumour patient organizations and others involved in the field of neuro oncology
  • International Radiosurgery Support Association
    • IRSA provides educational information on stereotactic radiosurgery for brain tumors and brain disorders to governments, regulatory agencies, insurers and referring physicians
  • National Institutes of Health Catalog of Clinical Trials
    • Searchable database which provides patients, family members and the public with information about current ongoing clinical research studies
  • Neuro-Oncology Branch of the National Institutes of Health
    • The Brain Tumor Clinic is comprised of a multidisciplinary team of physicians, other healthcare providers, and scientists who are dedicated to developing new therapies and improving outcomes for patients with primary brain and spinal cord tumors
  • Virtual Trials (The Musella Foundation For Brain Tumor Research and Information)
    • A 501(C)3 nonprofit public charity dedicated to helping brain tumor patients through emotional and financial support, education, advocacy and raising money for brain tumor research

Caregiver Sites

  • American Brain Tumor Association
  • The ABTA offers caregiver videos, webinars, and online support groups for brain tumor patients and their families
  • Caregiver Action Network
  • CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge
  • CaringBridge
  • CaringBridge website is a personal health journal, rallying friends and family during any type of health journey
  • Caring Info
  • CaringInfo is a program of the National Hospice and Palliative Care Organization which provides free resources to help people make decisions about end-of-life care and services before a crisis
  • Family Caregiver Alliance
  • Family Caregiver Alliance supports and sustains the important work of families nationwide caring for loved ones with chronic, disabling health conditions
  • Lotsa Helping Hands
  • Lotsa Helping Hands is a tool to help provide support to families and patients in need. With the Help Calendar, you can post requests for support – things like meals for the family, rides to medical appointments, or just stopping by to visit. Members of your community can quickly find ways to help, and Lotsa will send reminders and help coordinate logistics automatically so nothing falls through the cracks
  • National Caregivers Library
  • The National Caregivers Library is one of the most extensive libraries for caregivers that exist today. Find hundreds of articles, forms, checklists, and links to topic-specific external resources, organized into logical categories

Complementary and Alternative Medicine (CAM)

  • Clinical Trials for CAM
  • The National Center for Complementary and Integrative Health (NCCIH) is the Federal Government’s lead agency for scientific research on complementary and integrative health approaches. They are 1 of the 27 institutes and centers that make up the National Institutes of Health (NIH) within the U.S. Department of Health and Human Services
  • Medline Plus
  • MedlinePlus links to health information from the National Institutes of Health and other federal government agencies. MedlinePlus also links to health information from non-government Web sites
  • National Cancer Institute-Office of Cancer Complementary and Alternative Medicine
  • The Office of Cancer Complementary and Alternative Medicine (OCCAM) was established in October 1998 to coordinate and enhance the activities of the National Cancer Institute (NCI) in the arena of complementary and alternative medicine (CAM)
  • National Cancer for Complementary and Alternative Medicine
  • The NCCIH conducts and supports research and provides information about complementary health products and practices. Their website includes search engines for CAM and practitioners as well as recent news, safety information and links

Financial & Insurance Assistance/Legal Concerns

  • American Cancer Society
  • Find out about things you can do to protect yourself and your family, both legally and financially, if you have cancer. Learn about laws that protect your rights and professionals who can help you navigate the legal and financial systems
  • CancerCare
  • CancerCare provides telephone, online and face-to-face counseling, support groups, education, publications and financial and co-payment assistance. Professional oncology social workers offer personalized care, and all of their services are free of charge. Explore their website to learn more, or call them at 800-813-HOPE (4673)
  • Cancer Legal Line
  • Cancer Legal Line’s mission is to alleviate the non-medical stressors faced by cancer patients and their loved ones by educating and providing them with cancer related legal information, resources and referrals. They can be reached by phone at 651-917-9000
  • Cancer Legal Resource Center
  • The DLRC(Disability Legal Rights Center)provides information and resources to people across the nation. The CLRC helps to improve the quality of survivorship while also invoking policy change for those affected by cancer. The Cancer Legal Resource Center is one of several programs under the DLRC. They can be reached at:
    Tel: (213) 736-1455 or (866) THE-CLRC (843-2572)
    Fax: (213) 736-1428
    Email: CLRC@lls.edu
  • Patient Advocate Foundation
  • Patient Advocate Foundation’s Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness. They can also be reached at Phone: (800) 532-5274 – Fax: (757) 873-8999

Hospice Sites

  • Brain Tumor Hospice Care
  • This site was made by the daughter of a GBM brain tumor patient so that caregivers approaching the decision to enlist the care of hospice may recognize and understand end-stage events that are likely to happen, as well as find support in providing the best of loving care during this critical time
  • Hospice Foundation of America
  • HFA meets its mission by providing programs for professional development, public education and information; funding research, producing publications, and by providing information on issues related to hospice and end-of-life care. Their programs for healthcare professionals are designed to improve care of those with terminal illness and those experiencing the process of grief, and are offered on a national basis. Their programs for the public are designed to assist individual consumers of health care who are coping with issues of caregiving, terminal illness, and grief
  • National Association for Homecare and Hospice
  • The National Association for Home Care & Hospice (NAHC) is a nonprofit organization that represents the nation’s 33,000 home care and hospice organizations. NAHC also advocates for the more than two million nurses, therapists, aides and other caregivers employed by such organizations to provide in-home services to some 12 million Americans each year who are infirm, chronically ill, and disabled
  • National Hospice and Palliative Care Organization
  • National Hospice and Palliative Care Organization advocates for the terminally ill and their families. It also develops public and professional educational programs and materials to enhance understanding and availability of hospice and palliative care; convenes frequent meetings and symposia on emerging issues; provides technical informational resources to its membership; conducts research; monitors Congressional and regulatory activities; and works closely with other organizations that share an interest in end of life care

Emotional Support

  • American Psychosocial Oncology Society
  • APOS wasformed in 1986 to bring together professionals working in the psychological, behavioral and social aspects of cancer. Its mission broadened in the early 2000s to network professionals from all disciplines working in psychosocial oncology: nurses, social workers, psychologists, counselors, clergy and psychiatrists. Its annual conference shares new research and new clinical innovations with around 400-500 people. They offer conferences, pamphlets and a HelpLine at 1-866-276-7443 (1-866-APOS-4-HELP), part of the Cancer Support Helpline® (affiliated with the Cancer Support Community), connecting cancer patients and their caregivers with emotional health resources in their community
  • CancerCare
  • CancerCare provides telephone, online and face-to-face counseling, support groups, education, publications and financial and co-payment assistance. Professional oncology social workers offer personalized care, and all of their services are free of charge. Explore their website to learn more, or call them at 800-813-HOPE (4673)
  • Cancer Compass/CTCA
  • Resources for the latest cancer information and news, interactive discussion forums, and tangible advice for every aspect of cancer care.
    CancerCompass membership is free. You can create a personalized profile page, build a network of friends and stay up to date on their activity, Get the latest cancer news and information, Participate in community Message Boards, Share your opinions on news articles and blogs, and Receive a weekly CancerCompass newsletter
  • Cancer Support Community
  • In July 2009, The Wellness Community and Gilda’s Club Worldwide joined forces to become the Cancer Support Community. By helping to complete the cancer care plan, CSC optimizes patient care by providing essential, but often overlooked, services including support groups, counseling, education and healthy lifestyle programs. – See more at: http://www.cancersupportcommunity.org/MainMenu/About-CSC/Who-We-Are.html#sthash.orynMw4V.dpuf
  • Connections Online Community (ABTA)
  • The American Brain Tumor Association Connections Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the American Brain Tumor Association
  • Kids Konnected
  • Kids Konnected offers bereavment counseling, local support groups and even an emergency hotline to help those in need get through this difficult time in their lives. They offer support, understanding, community, comfort and a safe haven while kids go through their parent’s cancer journey. Kids can share with people their age who understand what it is like to experience cancer within the family. Through yearly summer camps, youth leadership, support groups and events, Kids Konnected is there for kids during the difficult and happy times as they go through their unique cancer experience within their families
  • Meningioma Mommas
  • Provides support and valuable resources to all those affected by meninigoma brain tumors. They fund ONLY meningioma specific research
  • Stupid Cancer
  • Stupid Cancer supports a global network of patients, survivors, caregivers, providers and advocates to ensure that no one affected by young adult cancer go unaware of the age-appropriate resources they are entitled to so they can get busy living. Their programs—such as CancerCon, The OMG! Cancer Summit for Young Adults, The Stupid Cancer Road Trip, Instapeer and many others—have brought the cause of ‘cancer under 40’ to the national spotlight and rallied a brand new generation of activists to give a much needed voice to our forgotten population
  • T.H.E. Brain Trust
  • Provides support to people affected by brain tumors and related conditions. The Brain Trust hosts a variety of online support groups, many of which are tumor type specific

General Cancer Sites

  • American Cancer Society
  • The American Cancer Society is one of the oldest resources for cancer patients to find information, resources, videos, and support in their battle with cancer. They provide a live chat option as well as a toll free number at #1-800-227-2345
  • CancerCare
  • CancerCare provides telephone, online and face-to-face counseling, support groups, education, publications and financial and co-payment assistance. Professional oncology social workers offer personalized care, and all of their services are free of charge. Explore their website to learn more, or call them at 800-813-HOPE (4673)
  • Cancer.Net
  • Provides timely, oncologist-approved information to help patients and families make informed health care decisions. All content is subject to a formal peer-review process by the Cancer.Net Editorial Board, composed of more than 150 medical, surgical, radiation, and pediatric oncologists, physician assistants, oncology nurses, social workers, and patient advocates
  • Cancer Journey
  • The Cancer Journey is the first Cancer Coach Training Company in the United States. With its signature program, Panic to Powerful,™ The Cancer Journey provides both personal cancer coaching services, to the growing population of cancer patients, survivors, and caregivers, and cancer coach training for those who want to serve the cancer community
  • National Cancer Institute
  • This website offers free, credible, current, comprehensive information about cancer prevention and screening, diagnosis and treatment, research across the cancer spectrum, clinical trials, and news and links to other NCI websites. The information on this site is science-based, authoritative, and up-to-date

Pediatric Resources

  • Brain Tumor Foundation for Children, Inc.
  • The Pediatric Brain Tumor Foundation works to eliminate the challenges of childhood brain tumors. As the world’s largest nonprofit source of funding for pediatric brain tumor research, their mission is to cure the kids. They provide resources to pediatric brain tumor patients and their families and host a variety of events around the country to support research for pediatric brain tumors
  • CureSearch
  • CureSearch for Children’s Cancer is a national non-profit foundation that accelerates the cure for children’s cancer by driving innovation, eliminating research barriers and solving the field’s most challenging problems. They provide a variety of resources to pediatric cancer patients and their families
  • Children’s Brain Tumor Foundation
  • CBTF offers a toll-free support line. By dialing 866-228-4673, you will be connected to trained pediatric neuro-oncology social workers. Programs like CBTF’s Family 2 Family Network allow families to share their experiences with other families experiencing similar dilemmas
  • National Children’s Cancer Society
  • The National Children’s Cancer Society (NCCS) provides emotional, financial and educational support to children with cancer, their families and survivors
  • WeCan!
  • We Can brings together families of children diagnosed with brain tumors in order to share information and personal stories, allowing young patients, their siblings and parents to nurture and empower one another to face treatment, recovery, long-term survival, end-of-life issues or bereavement. Their programs include parent-to-parent mentoring,family camps, hospital and clinic visits, Kidshops for patients and their siblings, teen and young adult group activities, and parent education and support meetings

Pharmaceutical Assistance

  • Diplomat Pharmacy
  • Apply for financial assistance in paying for chemotherapy medications. Call their funding specialists toll-free: 877.977.9118, ext. 89864
  • Genentech Access Solutions (Avastin Assistance)
  • Assistance options from Genentech for patients using Avastin (bevacizumab). Genentech offers three different program options to apply for. Phone number: 1-866-4-ACCESS
  • Merck ACT Program (Temodar)
  • This private and confidential program provides product free of charge to eligible individuals, primarily the uninsured who, without Merck’s assistance, could not afford needed Merck medicines. Individuals who don’t meet the insurance criteria may still qualify for this program if they attest that they have special circumstances of financial and medical hardship, and their income meets the program criteria. A single application may provide for up to 1 year of product free of charge to eligible individuals and an individual may reapply as many times as needed. Phone number: 866-363-6379
  • Musella Foundation
  • The Musella Foundation for Brain Tumor Research and Information, Inc., provides financial assistance to families who need help covering the cost of certain drugs used to treat a specific type of grade 3 or grade 4 brain tumor called a glioblastoma multiforme as well as some other types of GRADE 3 or 4 PRIMARY MALIGNANT BRAIN TUMORS, such as: Anaplastic Astrocytoma, Gliosarcoma, High Grade Oligodendroglioma. Other primary malignant brain tumors will be considered on a case by case basis. They cannot help people with other tumor types with this program. There is no fee for this assistance, and you will not be obligated to pay it back in any way. Covered Treatments are for Avastin, Gliadel, Novocure (Optune), and Temodar. There is a yearly maximum per person of $5,000
  • Needy Meds
  • Needy Meds provides an up to date list of assistance programs for many different pharmacy drugs. Type in the name of medication you need help with and a comprehensive list of all eligibility criteria will be generated for you
  • Partnership for Prescription Assistance
  • The Partnership for Prescription Assistance provides a search engine to look for any assistance programs for Temodar (Temozolomide), Avastin (bevacizumab), Novocure TTF (Optune), Gliadel Wafer, and more
  • Patient Access Network Foundation
  • The Patient Access Network Foundation (PAN) facilitates access to medical treatment for patients with chronic or life-threatening illness. If you have questions about PAN’S co-payment assistance, please call them toll-free at 1-866-316-PANF (1-866-316-7263). Trained staff members are available weekdays from 9:00 a.m. to 5 p.m. Eastern time
  • Rx Assist Patient Assistance Program Center
  • RxAssist offers a comprehensive database of patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need

Research Sites