The 7 Best Brain Tumor Support Groups of 2020

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First Look

Best Overall: Connections Brain Tumor Support Community

"The support group is designed to guide people upon the diagnosis of a brain tumor, or at any time throughout the process of living with it."

Best for Parents and Children: The Childhood Brain Tumor Foundation

"Families can be part of the community by participating and volunteering in local walk/run events or galas that raise funds for childhood brain tumor research."

Best For Young Adults: Stupid Cancer

"It encompasses support and education for young adults who have other types of cancer, although its early mission was centered on brain cancer."

Best for Clinical Trials: Brain Tumor Network

"They help to provide individualized treatment options, which can include clinical trials."

Best for Menigioma: Meningioma Mommas

"Meningioma Mommas provides critical support and valuable resources, while making lifelong connections."

Best for Pituitary: Pituitary Network Association Support Group

"The Pituitary Network Association offers self-help groups, support groups, and Facebook groups."

Best for Neurofibromatosis: Neurofibromatosis Network

"The Neurofibromatosis Network also includes local branches and Facebook groups."

Brain tumors can affect children and adults of all ages. While some brain tumors are deadly, not all brain tumors are life-threatening. But having a brain tumor 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.

Advocacy, awareness, social activities, and fundraising for brain tumor research are among the benefits you can take advantage of by being part of a brain tumor support group. 

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 the top brain tumor support groups to help you throughout your treatment and once you recover. 

Our Top Picks

Best Overall: Connections Brain Tumor Support Community

Connections Brain Tumor Support Community

Connections Brain Tumor Support Community

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

The support group is designed to guide people upon the diagnosis of a brain tumor, or at any time throughout the process of living with it. The ABTA Support Community offers a broad range of support resources, including the opportunity to share stories, volunteer, learn about brain cancer, and find mentors. 

The ABTA Support Community offers a mentor-matching service that pairs members with people who have had similar experiences. People can reach out to a mentor, be a mentor, or both.

One of the key features of this community is building a social connection while maintaining member privacy. The group’s website states that: “A staff of trained volunteer mentors offer social-emotional support and share their experience with brain tumor diagnosis, treatment, and care.”

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. 

Best for Parents and Children: The Childhood Brain Tumor Foundation

The Childhood Brain Tumor Foundation

The Childhood Brain Tumor Foundation

The Childhood Brain Tumor Foundation serves 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 mobility, fertility, and cognitive skills, even after they are cured.

Children and families may need lasting support and direction when learning how to manage these complex issues. Families can be part of the community by participating and volunteering in local walk/run events or galas that raise funds for childhood brain tumor research.

The website provides a place to find and share personal stories of childhood brain cancer. Children and their parents can submit their stories and read or watch the experiences of others who survived a childhood brain tumor. They can get updated information about treatment and research on the website, and you can sign up to receive newsletters.

The Childhood Brain Tumor Foundation is funded by sponsors and partners and includes a board and advisors. The three main aspects of this support group are community, resources, and support. 

Best For Young Adults: Stupid Cancer

Stupid Cancer

Stupid Cancer

Founded in 2012 by Matthew Zachary who was diagnosed with brain cancer at age 21, Stupid Cancer serves young adults who have brain cancer or who are survivors of brain cancer. Now, it also encompasses support and education for young adults who have other types of cancer, although its early mission was centered on brain 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. 

The organization is funded by supporters and corporate partners, and the support group employs a professional staff. In addition to the staff, the support group also relies on volunteer meetup leaders who organize and host local, in-person events, or digital meetups. The community welcomes member suggestions for venues and activities.

Best for Clinical Trials: Brain Tumor Network

Brain Tumor Network

Brain Tumor Network

Brain Tumor Network is 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 health care 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. 

Best for Menigioma: Meningioma Mommas

Meningioma Mommas

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 Mommas connects patients who are newly diagnosed with a meningioma and meningioma survivors through an online Facebook 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.

And, many support group members also choose to take the community support further by meeting in-person through local “meet and greets” and small social gatherings. Meningioma Mommas also works to raise awareness about meningiomas and the importance of meningioma research. 

The community also works hard on fundraising initiatives for meningioma-specific research. Funds are raised through contributions as well as events, such as 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 more.

Best for Pituitary: Pituitary Network Association Support Group

Pituitary Network Association Support Group

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. The Pituitary Network Association can help and is an international non-profit organization 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 Facebook groups. They are all focused on providing a community and can be held in a social environment or a community location.

Support groups are held in a medical environment and are focused on learning new coping strategies and problem-solving skills. They are guided and run by mental health professionals. For all self-help groups, a mental health professional is present to help participants process the emotionally-laden issues that come up within the community experience. While they are not directive in any way, they have an educational component.

In addition to in-person groups, the Pituitary Network Association Support Group runs two online communities on Facebook, where patients and their families can interact with each other. The option is available to participate in any or all of the formats for support.

Best for Neurofibromatosis: Neurofibromatosis Network

Neurofibromatosis Network

Neurofibromatosis Network

Neurofibromatosis is a lifelong condition characterized by brain and spine tumors. With over 18,000 members across the country and around the world, The Neurofibromatosis Network is a support group and discussion network for people who are diagnosed with Neurofibromatosis and their families. 

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 includes local branches and Facebook groups. The community offers events for 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. 

How We Chose the Best Brain Tumor Support Groups

We reviewed multiple sources and criteria when evaluating the features of different support groups, including whether the group provided a statement of its services, patient and supporting family resource offerings, and the characteristics and support each group provided.

Features like accessibility, patient privacy, medical accuracy and reliability, updated information, an unbiased approach, and professionalism all came into play when choosing our top picks for brain tumor support group.

What Are Brain Tumor Support Groups?

A brain tumor support group is a resource for people who have a brain tumor or who have recovered from a brain tumor. Some support groups are geared to different groups, such as kids, families, caregivers, or certain brain tumor types. Generally, they are funded by donations and run as nonprofit businesses. They provide information, connections, and networking. 

Is a Brain Tumor Support Group Right for Me?

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. 

How Are Brain Tumor Support Groups Structured?

Generally, is 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.

What Do They Cost?

The vast majority of brain tumor support groups are free, and all of our selections in this article are as well. Some of them have a fundraising arm, and you will likely be asked to make a contribution. You might receive requests for donations by email or phone or in-person when you attend events. You may also be asked to help raise money for the group by reaching out to your friends or family to contribute to the cause.  

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Article Sources
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