Online Support
Please click on any number below to find online support:
1. ADOLESCENTS AND YOUNG ADULTS (AYA)
2. BRAIN TUMOR GROUPS-GENERAL
3. CAREGIVER GROUPS
4. INTERNATIONAL GROUPS
5. CHILDREN’S GROUPS
6. OLDER ADULT GROUPS
7. PARENT’S GROUPS
8. SOCIAL NETWORKING SITES
9. WELLNESS GROUPS
1. ADOLESCENTS AND YOUNG ADULTS (AYA)
GROUP LOOP
www.grouploop.org
Group Loop is an online community for support, education, and hope for teens with cancer and their parents. Networking options include online support groups, discussion boards and a “friend’s database.”
I’M TOO YOUNG FOR THIS! (i[2]y)
www.imtooyoungforthis.org
I’m Too Young For This Cancer Foundation, i[2]y is a survivor-led advocacy, support and research organization working exclusively on behalf of survivors and care providers under the age of 40. i[2]y offers a collection of AYA resources which includes information on online forums.
NATIONAL DISABLED STUDENTS UNION (NDSU)
www.disabledstudents.org
NSDU is a national student organization which offers a listserv (an e-mail discussion list) for students with disabilities of all ages throughout the United States.
PLANET CANCER
www.planetcancer.org
Planet Cancer is an online community of young adults with cancer. At this website, there are a number of opportunities for social networking via blogs and chat forums.
PREPARE TO LIVE (P2L)
www.preparetolive.org
Prepare to Live is a unique non-profit organization which is founded and managed by cancer survivors. P2L is dedicated to using the power of web and film to build the young adult cancer community. Participants can share experiences with other young adults by connecting through the Buddy Search or share artwork through a collaborative art project, the White Square Project.
STARBRIGHT WORLD
www.starbrightworld.org
Starbright World is an online support network for teens with chronic and life threatening illnesses and their siblings. Teens can connect via bulletin boards, chat rooms and blogs.
TEENS LIVING WITH CANCER
www.teenslivingwithcancer.org
Teens Living with Cancer provides facts about cancer and tips for coping and healthy living. Teens are also able to connect with one another via discussion boards and teen connection stories.
TEENS OF PARENT SURVIVORS (TOPS)
www.braintrust.org/tops.htm
An online support group for teens who have a parent with a brain tumor.
REALTIME CANCER COMMUNITY-CANADA
www.youngadultcancer.ca/
RealTime Cancer Community Canada focuses on inspiring, informing and supporting young adults between the ages of 15-39. Blogs, forums and young adult survivor stories are available at the website.
YOUNG CANCER SPOUSES
www.youngcancerspouses.org
The mission of Young Cancer Spouses is to bring together young spouses of adults with cancer to share information, support and experiences. This website offers tips for caregivers, opportunities to share stories and message boards for networking.
BRAIN TUMOR ORGANIZATIONS
ABTA GROUP ON FACEBOOK
AMERICAN BRAIN TUMOR ASSOCIATION (ABTA) http://www.causes.com/braintumor
Join the ABTA group to network and socialize with other brain tumor survivors and individuals who share the same cause. View photos, videos and upcoming ABTA events.
BRAIN TUMOUR FOUNDATION OF CANADA
www.braintumour.ca
This Canadian-based charity offers a moderated Message Board that is open to brain tumor patients and family members. To subscribe click “Message and Chat” at the top of the page.
NATIONAL BRAIN TUMOR FOUNDATION (NBTF)
www.braintumor.org
NBTF is a non-profit organization which serves those affected by brain tumors. NBTF offers message boards and blogs for brain tumor survivors.
ARACHNOID ACTIVIST
http://arachnoidactivist.com
Moderated bulletin boards open to patients, family members and friends diagnosed with an aracnoid cyst. Must register prior to posting.
BRAIN TALK
www.irsa.org/index.html
Gamma Knife Brain Talk discussion group provide visors information on treatments for brain tumors, including stereotactic radiosurgery. This site is monitored by staff from various treatment sites. At their site click “Brain Talk Forum”. You can read and post without registering for the discussion forum, but to participate in the chat feature, registration is required.
BRAINTMR
http://mailman.mit.edu/mailman/listinfo/braintmr
Moderated list open to anyone interested in brain tumors, benign or malignant. To learn more about The Healing Exchange BRAIN TRUST visit http://www.braintrust.org, the organization that facilitates the BRAINTMR list as well as a dozen other online groups.
BRAIN TUMOR FAITH LIST AT VIRTUALTRIALS.COM www.virtualtrials.com
Designed for people involved with brain tumors as a forum for discussions about religion, faith and spirituality. To subscribe, visit choose Resources, then Online Support Groups.
BRAIN TUMOUR ACTION
http://health.groups.yahoo.com/group/btuk
This United Kingdom-based charity has opened an e-mail support group for brain tumor patients and their families in the UK. To be part of this list visit and follow the instructions to become a member.
BRAIN TUMOR SPECIFIC GROUPS
ACOUSTIC NEUROMA ASSOCIATION DISCUSSION FORUM http://anausa.org/forum/.
Moderated bulletin boards open to acoustic neuroma patients, family members and friends. Guidelines at the ANA web site: http://anausa.org. Register at the ANA Discussion Forum.
CHORDOMA
www.chordomasupport.org
A place for all those affected by chordoma to offer each other friendship, support and information concerning this rare disease.
EPENDYMOMA GROUP FOR ADULTS www.braintrust.org/adultependymoma.htm
A moderated online support group for adults with ependymomas, their caregivers and friends. The group is hosted by The Healing Exchange BRAIN TRUST.
EPENDYMOMA GROUP FOR PARENTS www.braintrust.org/ependyparents.htm
A moderated online support group for parents of children with ependymomas. The group is hosted by The Healing Exchange BRAIN TRUST.
IT’S JUST BENIGN
http://its-just-benign.ning.com
Website offers information, blogs, forums and videos to provide information, support and a means of communication for those diagnosed with a benign brain tumor.
LYMPHOMA GROUP
www.braintrust.org/lymphoma.htm
An online group for those diagnosed with Central Nervous System (brain and spinal cord) Lymphoma. Hosted by The Healing Exchange BRAIN Trust.
MACMILLAN CANCER SUPPORT ONLINE COMMUNITY
http://community.macmillan.org.uk
The website provides all those affected by cancer with a new opportunity to share their stories, discuss issues, swap information and tips and link up online with others in a similar situation.
MEDULLOBLASTOMA TUMOR LIST
A discussion list of medulloblastoma and PNET for exchanging information and support. The list is also open to discussion of all other types of pediatric brain tumors. To subscribe, send an e-mail to medulloblastoma-owner@yahoo.com. Leave the subject and the body of the message empty.
MENINGIOMA ONLINE SUPPORT GROUP
http://www.braintrust.org/meningioma.htm
For women and men with a meningioma. Hosted by The Healing Exchange BRAIN TRUST.
MENINGIOMA MOMMAS
www.MeningiomaMommas.org
An online support group for women and men with a meningioma.
MENINGIOMA SUPPORT AND INFORMATION LIST http://meningioma.intranets.com/
Message board, chat room, and news announcement for those interested in meningiomas.
MENINGIOMA TUMOR LIST www.hopkinsmedicine.org/radiosurgery/disorders/meningioma.cfm
For meningioma patients and their caregivers. This list is run by Johns Hopkins Medical Center's Radiosurgery Department. You need not have undergone radiosurgery to subscribe. To sign up, visit their web site at click Meningioma and look for the "Join the Meningioma List" graphic and enter your e-mail address. You'll receive an e-mail confirmation.
SPINAL CORD TUMOR SUPPORT
www.spinalcordtumor.homestead.com
A web site located at for those diagnosed with a spinal cord tumor. Includes discussion board, chat room, and a resource library. Users can access information without registering but are encouraged to do so by sharing their story.
3. CAREGIVER GROUPS
AUSTRALIAN CAREGIVER
http://health.groups.yahoo.com/group/OzBTcarerplace/
For people who have been carers for brain tumour sufferers, to cope with issues during caregiving or after the loss of their loved one.
BTCAREGIVERS
www.braintrust.org/btcaregivers.htm.
For caregivers of brain tumor patients. Hosted by The Healing Exchange BRAIN TRUST.
CARERS UK
www.carersuk.org
An online support network for those in the UK for people caring for family members with illness or disability. Click “forums” to access message boards.
CENTER FOR FAMILY CAREGIVERS
www.caregiving.com
Center for Family Caregivers offers a variety of resources for caregivers, including online support groups, an e-newsletter, caregiver message board, a caregiving packet, caregiver stories, tips, seminars and workshops.
FAMILY CAREGIVER ALLIANCE
www.caregiver.org
Offers an online discussion groups for caregivers. Also offers literature and resource information, including a newsletter, fact sheets in English, Chinese and Spanish, information about specific diseases and caregiving advice and strategies.
NATIONAL ORGANIZATION FOR EMPOWERING CAREGIVERS
www.care-givers.com
Offers a variety of online forums for caregivers, articles on caregiving, a print and online newsletter, caregiver stories, featured expert columns and emotional and spiritual support through journaling, healing circle, inspiration and humor.
NET OF CARE
www.netofcare.org
Net of Care is a resource network for caregivers. There is designed to help caregivers feel less isolated and overwhelmed by making them the best caregiver they can be. Their site features online support, education and information on the daily aspects of caregiving. As well as searchable local and national resource database, telephone support groups and an E-newsletter.
AUSTRALIAN LISTSERVE
http://health.groups.yahoo.com/group/OzBrainTumour/
This list is to assist Australians interested in local treatment options, assistance, and supporting each other. There are no restrictions on membership, though they ask subscribers to respect their interest in finding a community among Australians. They also request that any person joining the list who has any relevant commercial interest or professional status declare this in the signature of every message.
AUSTRALIAN CAREGIVER http://health.groups.yahoo.com/group/OzBTcarerplace/
For people who have been carers for brain tumour sufferers, to cope with issues during caregiving or after the loss of their loved one.
BRAIN TUMOUR ACTION
http://health.groups.yahoo.com/group/btuk
This United Kingdom-based charity has opened an e-mail support group for brain tumor patients and their families in the UK. To be part of this list visit their web site and follow the instructions to become a member.
BRAIN TUMOUR FOUNDATION OF CANADA
www.braintumour.ca
This Canadian-based charity offers a moderated Message Board that is open to brain tumor patients and family members. To subscribe visit their web site and click on “Message and Chat” at the top of the page.
CANADIAN LISTSERVE
http://health.groups.yahoo.com/group/btcanada/
For brain tumor patients, caregivers and family in Canada. This group lends support, shares stories and discusses a wide variety of issues related to brain tumors and how they are treated in the Canadian health care system.
CANCERBACKUP
www.whatnow.org.uk
Offers a new social networking site, What Now? The website provides all those affected by cancer with a new opportunity to share their stories, discuss issues, swap information and tips and link up online with others in a similar situation.
CARERS UK
www.carersuk.org
An online support network for those in the UK for people caring for family members with illness or disability.
GERMAN BRAIN TUMOR LIST
www.hirntumor.de
Informational listserv from brain tumor patients who speak German.
SINGAPORE BRAIN TUMOUR PATIENT CARE GROUP http://health.groups.yahoo.com/group/SGBrainTumour
The Singapore Brain Tumour Patient Care Group is an effort to help patients and families cope with this disease. By encouraging active participation in discussion groups and through meeting others who have had similar experiences, we want you to know that you are not alone in this battle. Offline, our support group meets on the last Friday evening of each month from 6 to 7:30 pm at NNI or NCC. It is their aim that these sessions be highly educational in providing up-to-date information and easy access to specialists on a variety of topics related to brain tumours. More importantly, they hope that patients and families will find the psychosocial and emotional support necessary to improve their quality of life.
TURKISH BRAIN TUMOR LIST http://health.groups.yahoo.com/group/beyintumorleri/
A brain tumor email group for patients, caregivers and health professionals in Turkish.
REALTIME CANCER-CANADA
www.youngadultcancer.ca/
Young Adult Cancer-Canada focuses on inspiring, informing and supporting young adults between the ages of 15-39. Blogs, forums and young adult survivor stories are available at the website.
5. CHILDREN’S GROUPS
BRAVE KIDS
www.bravekids.org
Brave Kids is a non-profit organization that serves the needs of children with chronic life-threatening illness or disabilities. Brave Kids offers an online community, with message boards for parents and kids.
NATIONAL DISABLED STUDENTS UNION (NDSU) www.disabledstudents.org
NSDU is a national student organization which offers a listserv (an e-mail discussion list) for students with disabilities of all ages throughout the United States.
PARTNERS FOR YOUTH WITH DISABILITIES (PYD)
www.pyd.org
PYD is a national organization which offers one-to-one mentoring and group mentoring programs for youth with disabilities. PYD offers “Partner’s Online” an online community with forums and chat rooms. PYD also offers and online parent forum for parents to access support.
AARP
www.aarp.org/onlinecommunity/
Their website offers an online community where people who share similar interests, hobbies or passions can exchange ideas, photos, videos and more.
BRAVE KIDS
www.bravekids.org
Brave Kids is a non-profit organization that serves the needs of children with chronic life-threatening illness or disabilities. Brave Kids offers an online community, with message boards for parents and kids.
BT HEALTHY KIDS ONLINE SUPPORT GROUP www.braintrust.org/bthealthykids.htm
An online list for families where one member has a brain tumor and there are healthy active children.
CARE TO SHARE CANCER CONNECTION www.nationalchildrenscancersociety.com
A moderated online support network of the National Children’s Cancer Society for parents to share information and experiences about their children on a wide range of topics. To participate on their web site click “message board” and follow the instructions to register.
CEREBELLAR MUTISM
http://health.groups.yahoo.com/group/cerebellarmutism
Parental support list for parents of children with brain tumors (medulloblastoma, astrocytoma, ependymoma, rhabdoid, choroid papilloma and others) affected by cerebellar mutism and posterior fossa syndrome after tumor removal.
EDUCATING BRAIN TUMOR KIDS http://groups.yahoo.com/group/EducatingBTKids
Educating BT Kid is an online education resource center for parents, schools, teachers and social workers. This listserv promotes questions and answers and resource linkage.
EPENDYMOMA GROUP FOR PARENTS www.braintrust.org/ependyparents.htm
A moderated online support group for parents of children with ependymomas. The group is hosted by The Healing Exchange BRAIN TRUST.
GROUP LOOP
www.grouploop.org
Group Loop is an online community for support, education, and hope for teens with cancer and their parents. Networking options include online support groups, discussion boards and a “friend’s database.”
IEP GUIDE
http://groups.yahoo.com/group/IEP_guide
This online listserv is available for parents, teachers and education professionals to discuss special ed., NCLB, Section 504, disability rights, etc. This listserv promoted questions and answers and resource linkage.
LIGHTHOUSE SOS
Offers an online discussion group for parents of children with brain tumors ages 0-20, both living and deceased in the following states: Iowa, Illinois, Kansas, Missouri, Minnesota, Nebraska, North Dakota, South Dakota and Wisconsin. To subscribe to this group send an email to iowabts-subscribe@yahoogroups.com, the list moderator will then send you a welcome message and directions.
PARTNERS FOR YOUTH WITH DISABILITIES (PYD)
www.pyd.org
PYD is a national organization which offers one-to-one mentoring and group mentoring programs for youth with disabilities. PYD offers “Partner’s Online” an online community with forums and chat rooms. PYD also offers and online parent forum for parents to access support.
PEDIATRIC BRAIN TUMORS http://health.groups.yahoo.com/group/Pediatricbraintumors/
This list is for the discussion of all types of pediatric brain tumors, primarily for parents and immediate family members, but health professionals are welcomed also.
8. SOCIAL NETWORKING SITES
ABTA GROUP ON FACEBOOK
AMERICAN BRAIN TUMOR ASSOCIATION (ABTA)
Join the ABTA group at http://www.causes.com/braintumor to network and socialize with other brain tumor survivors and individuals who share the same cause. View photos, videos and upcoming ABTA events.
CAREFLASH
www.careflash.com
CareFlash provides a common place on the internet to share information surrounding a loved one’s health circumstances. This allows people to donate time, meals or services during a stressful time. This is all available in a private, organized website, individual for each patient.
CAREGIVER MEDIA GROUP
www.caregiver.com
This website offers internet discussions, a care directory, and listings of caregiver support groups throughout the country, carelinks, and caregiver stories.
CAREPAGES
www.carepages.com
CarePages is a service that allows caregivers to create their own webpage to share information with designated family and friends. Sponsored by several healthcare organizations and hospitals, this service is free to families.
CARINGBRIDGE
www.caringbridge.org
This website gives caregivers the ability to create a personal webpage to share information with designated family and friends. It eases the burden of keeping family and friends informed. Patients and caregivers can draw strength from messages of support.
CARINGROAD
www.caringroad.org
An interactive online caregiver support network. Also offers practical information and personal stories. CaringRoad was created to connect family caregivers seeking the support and friendship of other family caregivers in an online community.
LOTSA HELPING HANDS
www.lotsahelpinghands.com
A free web service that allows caregivers to coordinate caregiving needs among friends and family members and other helpers. It’s an easy to use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in to help with tasks necessary for life to run smoothly during times of medical crisis or family caregiver exhaustion. It also offers a place to keep friends and family informed with updates, photos, message boards and more.
MYLIFELINE.ORG
www.mylifeline.org
Offers a helping calendar, an easy tool where friends and family can view the treatment schedule and learn how to best help. Also provides learning links, joke of the day and inspirational messages.
9. WELLNESS GROUPS
THE VIRTUAL WELLNESS COMMUNITY
www.thewellnesscommunity.org
A web site offering real time professionally facilitated online support groups, discussion board, a resource library, a mind/body room, meditation garden, kitchen and nutrition center.
WELL SPOUSE ASSOCIATION
www.wellspouse.org
Offers bulletin boards, an email listserve and an online mentorship program to link a spouse caregiver to another more experienced spouse caregiver by email or phone. Also offers “round robins” to connect spouses to each other through letter writing and face-to-face support groups throughout the country. Provides literature and a quarterly newsletter, “Mainstay” for members.
October 2009
2720 River Road
Des Plaines, IL 60018
Phone: 847-827-9910
Fax: 847-827-9918
Toll-free Phone: 800-886-2282
E-mail: info@abta.org