Note: on 1/3/2011, we changed the name of our main online support group from brain-temozolomide to BrainTumor-Treatments
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.
Dont' forget to subscribe to our Brain Tumor News Blast! It is an occasional email (1-5 times a week) with the latest news about brain tumors: trials, treatments, events, fundraisers and research!
This section of online support groups is run by us, The Musella Foundation For Brain Tumor Research & Information.
- Braintumor Treatments Group: Our main brain tumor online support group - talk is limited to medical discussions about brain tumor treatments (as well as diagnoses, testings, symptoms, etc). Discussion about all types of brain tumors is allowed: malignant, benign, primary and metastatic. No talk of politics, jokes, religion allowed. For those, use the other groups listed below!
- Brain-Novocure Group NEW! For people interested in the Novo TTF device (Tumor Treating Fields).
- 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
- 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
This group of lists are NOT run or endorsed by us.
They are just listed here for your conviencence.
- Oligodendroglioma Online Support Group
- 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 patients, carers and Astro Fund. Astro Fund offers information, inspiration and hope to all those living with a low-grade brain tumour via their website at www.astrofund.org.uk . To join the Low-Grade Glioma internet chat group, see http://health.groups.yahoo.com/group/gliomasupport/ or email firstname.lastname@example.org
- 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.
- Tectal Gliomas
- 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
- Techtal gliomas
- 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.
- Meningioma Support Group (Yahoogroups)
- 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
- 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
- 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.
- St. Louis Metro Area PBT Parent Support Group