Brain tumors can affect children and adults of all ages. And although not all brain tumors are life-threatening, it is a life-altering experience, even if you recover.

Connecting with brain tumor support groups can help you deal with the day to day issues and learn about your treatment options. You may be able to find compassionate peers and professionals who can provide a shoulder for you to lean on, and you can do the same for others—if and when you feel ready to offer support.

But not every support group has the same exact features. You might decide to participate in more than one support group to meet your needs, as you learn how to cope after being diagnosed with a brain tumor. We’ve chosen a few brain tumor support groups to help you throughout your treatment and beyond.

Connections Brain Tumor Support Community

American Brain Tumor Association’s (ABTA) Social and Emotional Supportserves members of all ages and all brain tumor types, as well as their families and caregivers.

These services are designed to guide people upon the diagnosis of a brain tumor, or at any time throughout the process of living with it. The ABTA Social and Emotional Support services offer a broad range of support resources, including the opportunity to share stories, find treatment centers and clinical trials, learn about brain cancer, and find mentors.

ABTA Social and Emotional Support services offer a mentor-matching service that pairs members with people who have had similar experiences. People can connect with a mentor to receive guidance and answers to their questions from someone who has experience with their diagnosis.

Education includes online information about brain tumors, as well as webinars that provide updates on research and treatment. In-person gatherings include activities such as local golf, running, and walking events.

The Childhood Brain Tumor Foundation

The Childhood Brain Tumor Foundationserves children who currently have brain tumors, childhood brain tumor survivors, and their parents. Some childhood brain tumor survivors can experience long term effects and quality of life issues, such as impaired vision, growth, fertility, or cognitive skills, after they are treated.

The website provides a place for children and their parents to read the experiences of others who survived a childhood brain tumor. They can get updated information about treatment, clinical trials, and research on the website, and you can sign up to receive newsletters.

Stupid Cancer

One of the main objectives of the group is building a sense of community through in-person and digital meetups to reduce the sense of isolation that adolescents and young adults who have brain cancer can experience.

Stupid Cancer also has a blog that showcases personal stories from the community, and its website also features webinars on topics that are of specific interest to young adults, such as dating and fertility.

In addition to the staff, the support group also relies on volunteer meetup leaders who organize and host local, in-person events, ordigital meetups. The community welcomes member suggestions for venues and activities.

Brain Tumor NetworkBrain Tumor Networkis a nonprofit, contribution-funded organization that serves brain tumor patients who are ages 18 and older. The support group’s focus is a free service that helps patients navigate treatment options.Brain Tumor Network’s core service relies on a volunteer advisory network of neurosurgeons, neuro-oncologists, and other healthcare providers around the country. Members will be assigned a personal navigator to help with the process of gathering records and sending them to the Brain Tumor Network.A network of professionals will review the records and treatments, including imaging studies and biopsy specimens, to provide individualized treatment options, which can include clinical trials.Navigators can also help connect members with a local community group of brain tumor patients and survivors for an in-person community of support. As part of its multidisciplinary team, the Brain Tumor Network also has an oncology social worker on staff who is available to offer members and their families guidance and support.

Brain Tumor Network

Brain Tumor Networkis a nonprofit, contribution-funded organization that serves brain tumor patients who are ages 18 and older. The support group’s focus is a free service that helps patients navigate treatment options.

Brain Tumor Network’s core service relies on a volunteer advisory network of neurosurgeons, neuro-oncologists, and other healthcare providers around the country. Members will be assigned a personal navigator to help with the process of gathering records and sending them to the Brain Tumor Network.

A network of professionals will review the records and treatments, including imaging studies and biopsy specimens, to provide individualized treatment options, which can include clinical trials.

Navigators can also help connect members with a local community group of brain tumor patients and survivors for an in-person community of support. As part of its multidisciplinary team, the Brain Tumor Network also has an oncology social worker on staff who is available to offer members and their families guidance and support.

Meningioma Mommas

Meningiomas are the most common, primary brain tumor type. While these tumors often have a good prognosis, surgery is the most common treatment. After treatment, many survivors of meningioma may continue to experience ongoing medical issues that they might want to discuss with other survivors.

Meningioma Mommasconnects patients who are newly diagnosed with a meningioma and meningioma survivors through an onlineFacebook support group. Members can interact with other patients and survivors through the group, sharing their personal tips and helping each other cope, as they learn what to expect.

The community also works hard on fundraising initiatives for meningioma-specific research. Funds are raised through contributions as well as events, such as walks and runs. Meningioma Mommas have granted proceeds to promising research projects at a number of prominent universities throughout the U.S. like Stanford University, Harvard University, University of Utah, and many more.

Pituitary Network Association Support Group

Pituitary tumors may involve lifelong issues that can affect survivors, such as the need for hormone supplementation or the risk of infertility.ThePituitary Network Associationcan help. This international non-profit organization is for patients with pituitary tumors, as well as their loved ones.

The Pituitary Network Association addresses these needs with self-help groups, support groups, and education. They are focused on providing a community and can be held in an online format, social setting, or in a medical environment such as a hospital. They also have an online library for members filled with helpful information, plus ongoing webinars to attend.

In addition to in-person groups, the Pituitary Network Association Support Group runs two online communities on Facebook, one forpatientsand another forfamilies and caregivers. The option is available to participate in any or all of the formats for support.

Neurofibromatosis Network

The group offers a publicly accessible question and answer component on the website, which is divided into sections such as “NF 1 and children” or “NF 1 and pregnancy.” These discussions are rated based on their level of usefulness. There’s also a private group for closed discussions with members.

The Neurofibromatosis Network also includeslocal branchesandFacebook groups. The community offerseventsfor patients of all ages, including concerts and opportunities to join advocacy groups or awareness campaigns.

Resources for children’s activities, such as camps for kids who have NF, are also available.

Frequently Asked Questions

You or your family might want to turn to a brain tumor support group for a variety of reasons: finding others who have experienced the same condition, friendship, learning how to care for a family member who has a brain tumor, or dealing with emotional trauma. And, you or your family member might benefit from joining more than one of them if one doesn’t quite fulfill the needs that you have. Keep in mind that you might not necessarily want to remain a part of a brain tumor support group after your life evolves and your needs change, and that’s perfectly okay.

Generally, they’re focused around a mission. That mission may be about connecting people, raising awareness, providing information, or raising money. There are usually paid administrations or staff and a level of advisory oversight. Volunteers can be a large part of running projects, too.

6 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Mallya S, Daniels M, Kanter C, et al.A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers.Support Care Cancer. 2020;28(6):2659-2667. doi:10.1007/s00520-019-05069-5Rhee M, Mui P, Cadogan C, Imerman J, Lindsell S, Samant LT.The role of brain tumor advocacy groups.Curr Neurol Neurosci Rep. 2014;14(4):442. doi:10.1007/s11910-014-0442-zAmerican Cancer Society.Late effects of childhood cancer treatment.American Association of Neurological Surgeons.Meningiomas.American Cancer Society.Living as a pituitary tumor survivor.National Human Genome Research Institute.About neurofibromatosis.

6 Sources

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Mallya S, Daniels M, Kanter C, et al.A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers.Support Care Cancer. 2020;28(6):2659-2667. doi:10.1007/s00520-019-05069-5Rhee M, Mui P, Cadogan C, Imerman J, Lindsell S, Samant LT.The role of brain tumor advocacy groups.Curr Neurol Neurosci Rep. 2014;14(4):442. doi:10.1007/s11910-014-0442-zAmerican Cancer Society.Late effects of childhood cancer treatment.American Association of Neurological Surgeons.Meningiomas.American Cancer Society.Living as a pituitary tumor survivor.National Human Genome Research Institute.About neurofibromatosis.

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

Mallya S, Daniels M, Kanter C, et al.A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers.Support Care Cancer. 2020;28(6):2659-2667. doi:10.1007/s00520-019-05069-5Rhee M, Mui P, Cadogan C, Imerman J, Lindsell S, Samant LT.The role of brain tumor advocacy groups.Curr Neurol Neurosci Rep. 2014;14(4):442. doi:10.1007/s11910-014-0442-zAmerican Cancer Society.Late effects of childhood cancer treatment.American Association of Neurological Surgeons.Meningiomas.American Cancer Society.Living as a pituitary tumor survivor.National Human Genome Research Institute.About neurofibromatosis.

Mallya S, Daniels M, Kanter C, et al.A qualitative analysis of the benefits and barriers of support groups for patients with brain tumours and their caregivers.Support Care Cancer. 2020;28(6):2659-2667. doi:10.1007/s00520-019-05069-5

Rhee M, Mui P, Cadogan C, Imerman J, Lindsell S, Samant LT.The role of brain tumor advocacy groups.Curr Neurol Neurosci Rep. 2014;14(4):442. doi:10.1007/s11910-014-0442-z

American Cancer Society.Late effects of childhood cancer treatment.

American Association of Neurological Surgeons.Meningiomas.

American Cancer Society.Living as a pituitary tumor survivor.

National Human Genome Research Institute.About neurofibromatosis.

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