This page lists the most important online support groups for brain tumors.

An online support group - which is also called a "mailing list", is an internet structure of a community of people with a common interest. They communicate with each other by email. Every message that is sent to the 'list server' is then fowarded to each member of the list. If you reply to that message, you have 2 options. You can reply directly to the author of the message, if the response is personal, or reply to the list if you feel your response is important for the entire group.

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This first group is run by us, The Musella Foundation For Brain Tumor Research & Information.

• Temodar (Brain - Temozolomide) Group: Originally was for patients / caregivers / doctors interested in the drug Temozolomide (Temodar) for brain tumors. Now we have expanded it to include all medical treatments for all types of brain tumors: malignant, benign, primary and metastatic. No talk of politics, jokes, religion allowed. For those, use the other groups listed below! This one is run by the Musella Foundation
• Acoustic Neuroma Group NEW!
• Braintumor Community Group: For NON Medical discussion - for patients / caregivers / doctors interested in brain tumors! THIS IS AN ADULTS ONLY GROUP. Some humor and discussions will be offensive! Use this group for the types of messages that are off-topic on the other groups! Humor and politics are welcome here! Run by the Musella Foundation.
• Spinal GBM group: For people interested in a spinal GBMs.
• Brain - Gleevec group: For people interested in the experimental drug Gleevec for brain tumors. Run by the Musella Foundation
• Brain Tumor Virtual Trial Group: For people who are participating in our brain tumor virtual trial. Run by the Musella Foundation
• Bt-Faith Group: For discussions involving faith / religion / God among people interested in brain tumors.
• Optic Glioma Group
• Brainstem Glioma Group: Adult and children with brainstem tumors.
• Choroid Plexus Papilloma Information and Support Share Group

• The Bereavement mailing list is for Family members and friends of whom have lost a loved one due to a brain tumor. Please Note: Membership is restricted to those that have lost a loved one due to a brain tumor. http://health.groups.yahoo.com/group/bereavement/join
• Low-Grade Glioma Support is a secure internet chat group for patients and carers from around the world. This supportive environment is moderated jointly by founding patient Joe Ralph, and the SDBTT Astro Fund. The Samantha Dickson Brain Tumour Trust, Astro Fund is the only charity in the UK concentrating solely on low-grade gliomas. They offer individual, confidential support to patients and carers, as well as funding research projects to try and find a cure.
  SDBTT Astro Fund www.astrofund.org.uk . To join the Low-Grade Glioma internet chat group, see http://health.groups.yahoo.com/group/gliomasupport/ or email glioma@hotmail.co.uk
• Ruta 6 - An alternative treatment for brain tumors. Click HERE to see an article about it. We are also doing a study to track the outcomes. To participate, join the brain tumor virtual trial.
• Low Grade Glioma Kids site
• BrainSurgery Group a support website/mailing lists for brain tumor patients, has been in operation since February 2000. Thier purpose is to educate patients, families and medical professionals and to improve the quality of medical care/follow-up and increase knowledge and awareness.
• Pediatric Brain Tumors- This list is for the discussion of all pediatric brain tumors, primarily by parents and immediate family. However, all medical professionals both involved in the diagnosis and treatment are welcome. We deal with the tough stuff head on. We laugh, we cry, we argue and vent together as we search for answers. For the protection of members, short bio (a little bit about you and your interest in the group) will be requested after submitting your membership request and before we provide full access.
• Bt-finance Group: For discussions involving financial matters among people interested in brain tumors, including insurance issues, disability issues, prescription assistance plans.
• Brain - Activist Group: An e-mail discussion of legal, regulatory and public policy issues impacting cancer patient rights and benefits in clinical trials, especially brain cancer patients. Purpose of educating and empowering the patient community and especially the brain cancer patient community..
• Adult ependymoma mailing list - an on-line support group for adult ependymoma patients, caregivers and relatives
• Teens of Parent Survivors is a support group started to allow teenagers who have parents with a brain tumor to discuss issues, concerns, and just talk about everyday life while having a parent who is ill. Please email me at OoLewieoO@aol.com if you would like to join. ~ Rita Lewis
• Australian Brain Tumour Discussion Group
• Pacific NorthWest Braintumor List: For brain tumor patients / caregivers in the United States Pacific Northwest!
• Chordoma Support Group
• Fenretinide. This list is a discussion group for anyone taking or has an interest in Fenretinide and other retinoids (accutante, retinoic acid) for the treatment of cancer.
• Brain Tumor News Group: A 'read-only' list which sends you stories in the news about braintumors. Don't forget to also sign up for our virtualtrials daily news blast!
• Educating Brain Tumor Kids
• Cerebellar mutism and posterior fossa syndrome
• Brain Tumor Canada Group: supports the treatment of brain tumors in Canada.
• Pituitary Tumor List
• Meningioma Mammas - online community for Meningioma patients.
• Hopkins Meningioma Mailing List
• Meningioma Support Group (Yahoogroups)
• Meningioma Talk
• Medulloblastoma Group
• BEREAVEMENT - The Bereavement Support Group is the primary Bereavement an online community of which its purpose is provide support to family members and friends whom have lost a loved one due to a brain tumor.
• Hypothalamic Hamartoma Information and Support Share Group
• Hypothalamic Obesity , an unexplained weight gain complication of neurosurgery near the hypothalamus.
• SupremeCrossings Mailing List is open to any individual needing support or wishing to provide support in the areas of Brain Tumor end of life, before, during and after as well as sharing and providing home health care support issues.
• bthealthykids This is a list created by brain tumor patients and caregivers of brain tumor patients who, in addition to the many demands that come from dealing with a brain tumor in the family, are also contending with the day-to-day joys and sorrows of raising children. There are many extra concerns and stresses with respect to parenting issues, whether they have to do with the children's questions about the brain tumor or a simple bee sting.
• btcaregivers This is the only forum where brain tumor caregivers can praise and rail, laugh and fume, feel their whole fear and release their stress without the worry of hurting the loved one for whom they offer care. Just as there are things that patients can only discuss with each other, there are things that caregivers can only truly express to other caregivers.

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