Mesothelioma Support Groups

Why to Join a Mesothelioma Support Group

Support options for mesothelioma are usually provided by non-profit groups active in mesothelioma research. The resources range from support groups to handle the emotional toll of a cancer diagnosis to support events to raise awareness and funding for research.

While finding in-person support groups is difficult, the internet makes coming together much easier. Through online and in-person support groups, patients can share their stories and meet others going through the same hardships.

Support groups are important because they:

• Help build confidence in doctors and treatments
• Reduce the stress of the diagnosis
• Provide inspiration and hope
• Offer comfort and acceptance
• Give a sense of community
• Provide empathy among patients, family members and caregivers

Types of Mesothelioma Support Groups

There are support groups available for anyone affected by mesothelioma. This includes support groups for:

• Mesothelioma patients – People directly impacted by this cancer and struggling with the emotional and physical toll of the cancer diagnosis, treatments, survival rates and more
• Mesothelioma survivors – Survivors of cancer deserving emotional support due to the anxiety of cancer returning, plus the emotional and physical toll their battle required
• Family members of patients – Family members enduring the mesothelioma diagnosis and treatment process with their loved one, which can take an emotional and physical toll on all involved
• Mesothelioma caregivers – Caregiving for a mesothelioma patient is tough and caregivers, including family members, friends and medical professionals, deserve support
• Veterans with mesothelioma – Veterans make up more than one-third of people with mesothelioma and deserve specialized support groups tailored to military veterans

Mesothelioma Support Foundations

Mesothelioma Guide compiled a list of support foundations that work with patients and family members. If you’re affected by mesothelioma – either as a patient or a patient’s loved one – you can rely on these foundations for free resources and emotional support.

The Mesothelioma Applied Research Foundation

The Mesothelioma Applied Research Foundation is a non-profit organization made up  of patients, families, physicians, advocates and researchers focused on ending mesothelioma. This charity organization helps fund research for new treatment options, provides support and education to patients and families, and advocates for federal funding.

International Mesothelioma Interest Group

The International Mesothelioma Interest Group is an alliance of doctors, researchers and other medical professionals. The group holds an international mesothelioma conference every other year, with the last one held virtually in 2021. The intent of the group is to improve collaboration among mesothelioma specialists, including research into mesothelioma cells, antibodies and clinical trials. Visit the International Mesothelioma Interest Group website for more.

Mesothelioma Research Foundation of America

The Mesothelioma Research Foundation of America funds research with the goal of finding a cure for mesothelioma. The foundation started in 2001 and helped fund the opening of the mesothelioma research laboratory at University of Southern California Norris Comprehensive Cancer Center.

Pacific Mesothelioma Center

The Pacific Mesothelioma Center is a division of the Pacific Heart Lung & Blood Institute. The non-profit center was founded in 2012 with the mission of researching mesothelioma treatments.

Canadian Mesothelioma Foundation (CMF)

The Canadian Mesothelioma Foundation is a non-profit, mostly volunteer-run organization that raises awareness about malignant mesothelioma cancer in Canada. The foundation was founded in 2008 and offers private, invite-only online support groups for mesothelioma patients, caregivers, family and the bereaved.

Support Groups at Brigham and Women’s Hospital

Brigham and Women’s Hospital, in Boston, Massachusetts, has three support groups or programs for mesothelioma patients and their families. These groups highlight the advantages of receiving treatment from Brigham and Women’s Dana-Farber Cancer Institute. Visit this page for a list of all cancer support groups at Brigham and Women’s Hospital.

Mesothelioma Orientation Group

This group is an educational orientation program for patients newly diagnosed with mesothelioma. Patients and loved ones are presented with information from doctors, nurses, researchers, social workers and patient navigators.

Contact: Beth Flanzbaum, LICSW at 617-525-3020. Meeting times vary. Patients are scheduled for this program immediately after the first medical appointment with the mesothelioma treatment team at Brigham and Women’s Hospital.

Mesothelioma Support Group for Family Members or Caregivers

Group is co-led by Brigham and Women’s Social Work and Chaplaincy teams. This is a support group for family members or caregivers of patients diagnosed with mesothelioma. A focused discussion about caregiver issues and encouraging good self-care.

Contact: Beth Flanzbaum, LICSW at 617-525-3020. Meetings are Wednesdays from 12-1:00pm in the Multipurpose Room on the 11th floor of the Braunwald Tower. Lunch is served.

Living with Mesothelioma Virtual and/or Live Support Group

These meetings at Brigham and Women’s Hospital occur sporadically and provide emotional support and information to people living with mesothelioma and their loved ones.

Contact: Beth Flanzbaum LICSW at 617-525-3020 for more information. The meeting schedule is published yearly and is available by contacting the hospital’s International Mesothelioma Program.

Phone-Based Mesothelioma Support Groups

Hearing a comforting voice of someone who understands what you’re going through is very helpful. Below is a series of phone-based support groups that you can join.

Mesothelioma Applied Research Foundation Phone Groups

The Mesothelioma Applied Research Foundation offers a variety of options for patients to take part in teleconference-style support groups. Visit the Mesothelioma Applied Research Foundation website.

Online Mesothelioma Support Groups

Many people diagnosed with mesothelioma will turn to the internet for answers to their questions. While Mesothelioma Guide’s website offers information and support (such as our print Guide to Mesothelioma book), online support groups give patients a firsthand opportunity to tell their stories and share their experiences.

Mesothelioma Guide Facebook Page

This open group is managed by Mesothelioma Guide and offers news about research and other information regarding mesothelioma. Visit the Mesothelioma Guide Facebook page.

Other Cancer Support Groups and Organizations

Mesothelioma patients can take advantage of support resources from more general cancer organizations. These non-profits provide support groups for all patients with cancer.

These support options are all online or over the phone.

American Cancer Society

The American Cancer Society is the most well-known non-profit agency for cancer fundraising and awareness. The American Cancer Society has numerous online and phone support groups for cancer patients. Visit the American Cancer Society website for information on support groups and resources.

The American Cancer Society also has a phone support helpline 24 hours a day, 7 days a week. This support, called the National Cancer Information Center, has trained cancer information specialists providing phone support to patients, families and caregivers. Call 1-800-227-2345 to reach the cancer helpline. You can also schedule a video chat with a specialist.

Cancer Support Community

The Cancer Support Community offers support for those that have been recently diagnosed or are longtime cancer patients. One of the options is calling the Cancer Support Community Helpline. Visit the Cancer Support Community website.

CancerCare

CancerCare supports people affected by all types of cancer, including mesothelioma. The free services include individual and group counseling with oncology social workers, plus virtual counseling through the CancerCare telephone HOPEline. These groups are for patients, family members and caregivers. Visit the CancerCare website.

CaringBridge

CaringBridge is a non-profit organization that allows patients to share their stories, inspire hope, and support others. The goal of CaringBridge is to create a community that is easily accessible to family and friends. It helps keep them updated about a health crisis their loved one may be experiencing.

The goal of CaringBridge is to create a community that is easily accessible to family and friends. It helps keep them updated about a health crisis their loved one may be experiencing.

CaringBridge allows a user to create a personal website that allows family and friends to receive updates about their progress during their health journey. In return, a user’s loved ones are able to offer their support and words of encouragement during difficult times. CaringBridge has more than 2,500 volunteers and patients have made more than 500,000 websites. Visit the CaringBridge website.

Daily Strength

Daily Strength was created to provide a community sharing information and insights. Visit the Daily Strength website.

Cancer Survivors Network

Cancer Survivors Network is affiliated with the American Cancer Society. It offers online message boards for patient support. Visit the Cancer Survivors Network website.

I Had Cancer

I Had Cancer is an online support community for cancer patients and survivors. It includes resources and help for people in every stage of their cancer battle, from those just diagnosed to those who have beaten their diagnosis. Visit the I Had Cancer website to learn more.

Inspire

Inspire is an online network for patients and caregivers. Inspire gives the chance to connect with people who have similar types of cancer. The community is through a website or a phone app. Visit the Inspire website for more.

Share the Care

Share the Care is an online support resource and network for cancer caregivers. This non-profit organization helps caregivers share their experiences and also helps match caregivers to cancer patients who are living alone. Visit the Share the Care website to learn more.

Mesothelioma Support Events

Below is a list of the annual events or awareness days for mesothelioma. Mark your calendar to participate or sign up for conferences.

National Mesothelioma Awareness Day

National Mesothelioma Awareness Day is September 26th every year. People support this day by wearing a blue ribbon to raise awareness of mesothelioma.

Global Asbestos Awareness Week

Global Asbestos Awareness Week is the first week of April every year. The week is intended to raise awareness of the dangers of asbestos, a mineral that causes mesothelioma cancer. The ultimate goal of the week is to push for a ban of asbestos worldwide.

International Symposium on Malignant Mesothelioma

The International Symposium on Malignant Mesothelioma is an annual conference hosted by the Mesothelioma Applied Research Foundation. It is held in a different metropolitan city each year. In 2022, it was held in Chicago. The dates differ year to year, but the conference is usually in July.

The conference features top mesothelioma specialists, survivors and mesothelioma advocates. View more information on the International Symposium event website.

International Asbestos Awareness and Prevention Conference

The International Asbestos Awareness and Prevention Conference is an annual event hosted by the Asbestos Disease and Awareness Organization (ADAO). It has varying dates and locations The 2022 event was held in September.

The conference features speakers from diverse backgrounds, including doctors and survivors of mesothelioma, hoping to spread awareness about asbestos diseases. View more information on the ADAO website.