The Patient Services Department of the National Brain Tumor Society offers top-notch resources and caring support for everyone affected by brain tumors.
- We focus our services on patient information, patient and caregiver support, and community programs.
- We empower patients and their families with education and information.
- We provide easy access to comprehensive information and support online, in print, and through our patient services line.
- We host educational events around the country and partner with community centers/resources.
- We make sure that families and caregivers have the best possible support systems available, including treatment center information, direct services online, access to support groups, local programs, and more.
We are inclusive in our efforts to find a cure and to provide the best patient services possible. NBTS works in partnership with medical professionals, researchers, individuals, peer organizations, government agencies, corporations, and the media. Click on the links below for details about specific programs.
- Patient Services Line (800.934.2873)
- Comprehensive Website (www.braintumor.org)
- Medical Information Specialist
- The Essential Guide to Brain Tumors and other printed publications
- Web/Teleconferences
- Treatment Center Database
- Spanish Language programs and services
Support Programs
Community Based Programs
Patient Education Programs
- Patient Services Line (800.934.2873)
The Patient Services Line is a toll-free information and support phone line, staffed by trained health information specialists. We receive over 10,000 phone calls and emails each year from patients, family members, and health professionals. Depending on their needs, callers receive a full assessment, personalized information packets sent by mail, and follow up emails or calls. - Comprehensive Website (www.braintumor.org)
The NBTS website is a critical resource for patients and families searching for reliable health information and support on the internet. Visitors find information on tumor types, treatment options, and NBTS publications and visitors can also access our searchable treatment center database and submit questions to our nurse for a response. The website also offers support resources such as a vibrant online community of message boards and the Patient and Caregiver Support Networks. - Medical Information Specialist
Mary Lovely, RN, PhD is a leader in the field of symptom management for brain tumor patients and a career Neuro-Clinical Nurse Specialist. As the Medical Information Specialist, a position sponsored by the Tim and Tom Gullikson Foundation, Dr. Lovely offers phone and email consultations with patients and family members. She uses her experience and expertise to help patients translate medical jargon, understand how to manage their symptoms, fatigue, and cognitive changes, and explain current treatment options. - The Essential Guide to Brain Tumors and other printed publications
The Essential Guide offers a comprehensive look at brain tumors in a colorful, easy to read magazine format. Topics include the causes of brain tumors, major treatment modalities, symptom management, and issues for caregivers and survivors. NBTS provides The Essential Guide and many other high quality publications free of charge to patients and health professionals as a way to ensure that people have the information they need to make good care decisions. - Web/Teleconferences
NBTS provides free interactive educational programs via webcast and telephone to patients, families, and health professionals several times each year. Topics have included: Advances in Chemotherapy for Brain Tumor Patients; Neuropsychology: Coping with Cognitive and Personality Changes; When a Parent Has Cancer: A Program for College Students; Speech Therapy for Brain Tumor Patients, and more. These programs are accessible through the NBTS website following the program and serve as on-demand educational resource. - Treatment Center Database
NBTS provides a searchable database of brain tumor treatment centers available through our website to help patients and families decide where to go for treatment. Each treatment center’s profile contains contact information, specific treatments, technologies, and specialists available at the center and the number of patients treated annually. - Spanish Language programs and services
NBTS is the only major adult brain tumor organization with information, resources, and supportive services provided in Spanish. Our Patient Information Line is staffed by a bilingual Spanish health information specialist, we have brochures and fact sheets available in Spanish, and our peer support network includes Spanish speaking volunteers.
Patient Support Programs
- Financial Assistance Program
Families are often faced with not only the overwhelming costs of treatment, but ongoing loss of income and increased expenses. The NBTS financial assistance program provides grants of up to $500 to assist with treatment related expenses and non-medical expenses including child care, home care, home adaptations, and transportation. - Patient and Caregiver Peer Support Networks
The NBTS support networks are peer support programs for patients and caregivers. Newly diagnosed patients and their caregivers can be matched with volunteer survivors or caregivers for information and support over the phone or email. Patients can be matched with a survivor who is close to their age, has the same tumor type or other variables. Caregivers can be matched with someone who is in a similar caregiving relationship or shares other commonalities. - Online Message Boards
The NBTS Message Boards provide an online forum for patients and families to connect with others affected by brain tumors for information and support. NBTS hosts five message boards currently—one for those affected by GBM tumors, one for those affected by other malignant tumors, one for the ‘benign’ tumor community, one for the pediatric community, and one for young adults. These boards receive thousands of hits each month.
Community Based Programs
- Caregiver Trainings
NBTS developed the national caregiver training program in 2004 to meet the needs of families of brain tumor patients. Because a brain tumor happens to the entire family, it is critical that family caregivers receive the information, resources, and support they need to be effective and provide good care. These free day-long workshops, which have been implemented in over 35 hospitals across the county, are also helping to ensure that the unique needs of family caregivers are recognized. Speakers include a neuro-oncologist, nurse, social worker, physical therapist, lawyer, palliative care specialist, and neuropsychologist. Topics include symptom management, finding community resources, legal issues for caregivers, and hospice and palliative care. - One Day Regional Conferences
Our One Day Regional Conferences entitled, “Let’s Talk about Brain Tumors” allow NBTS to host face to face education and support events in medium to large cities throughout the US. These conferences are produced in collaboration with one or more treatment centers and include doctors, nurses, social workers, and other presenters as well as exhibits by corporate partners and community based organizations. Attendance has ranged from over 300 people at our recent joint conference in Sacramento to 65 in Phoenix last year.