This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.
National. Support and information for persons with brain tumors and their loved ones. Provides funding for research as well as client services for brain tumor patients and family members. Offers support group and treatment center listings, a monthly e-newsletter, conferences, literature, Patient Services Line, an online community, webinars, information and referrals. Assistance in starting and maintaining support groups.
National Brain Tumor Society
124 Waterton St. Ste 2D
Boston, MA 02472
National. 26 state associations. 600 affiliated groups. Founded 1980. Advocacy organization providing services to persons with brain injuries, their families and professionals. Increases public awareness through state associations, support groups, information and resource network, seminars, conferences, literature and prevention programs. Guidelines for starting similar groups.
Brain Injury Association
1608 Spring Hill Rd., Suite 110
Vienna, VA 22182
Voice: 1-800-444-6443 (National Brain Injury Information Center) or 703-761-0750
National. 53 affiliated groups. Founded 1981. Support and information for patients who have been diagnosed with acoustic neuroma, a benign tumor affecting the 8th cranial nerve. Quarterly newsletter ($45/yr.), nationwide support group network, biennial national symposium and patient information booklets.
Acoustic Neuroma Association
600 Peachtree Parkway, Suite 108
Cumming, GA 30041-6899
Voice: 1-877-200-8211 or 770-205-8211
(BILINGUAL) National network. Founded 1988. Provides a family-to-family network to link parents of a child with a brain or spinal cord tumor with another parent with similar experiences for information and support. Offers free resource guide (English/Spanish), 'Parker's Brain Storm' (a book for children), Brain Tumor Family Camps, Teen and Young Adult Heads Up Conferences at Camp Make-A-Dream, newsletter, annual teleconferences (available for replay on website) and funds research.
Children's Brain Tumor Foundation
274 Madison Ave., Suite 1004
New York, NY 10016
Voice: 1-866-228-4673 or 212-448-9494
Online. Founded 1997. Mission is to exchange support and information among people affected by brain tumors and related conditions including patient-survivors, families, caregivers and health professionals. Online support groups cover a large range of brain tumors, acquired injuries and other special interests.
The Brain Trust
495 Broadway, Ste 302
Everett, MA 02149
National. Provides emotional support and exchange of information for patients with various brain tumors and their families. Information on research, medication and clinical trials. Co-payment assistance program for glioblastoma multiforme patients. Chatrooms, support groups, video library and other resources.
1100 Peninsula Blvd.
Hewlett, NY 11557
International. Founded 2007. Support for families and caregivers of children battling all tupes of brain tumors, including the most common forms, pediatric low grade astrocytomas. Offers patient driven online support network through Yahoo, listserv, Facebook, e-mail discussion group, phone support and international conferences. How-to materials for starting a support group are provided on website.
A Kids Brain Tumor Cure Foundation
98 Random Farms Dr.
Chappaqua, NY 10514
Online. Provides information, support, advocacy, resources and a means of communication for those diagnosed with benign brain tumors. Discussion groups, message boards, social events, videos and speaking engagements.
Georgia's Brain Injury Tele-Conference Support Group * Model. Provides support and education to survivors of traumatic brain injuries through telephone groups and teleconferencing. Provides coping strategies for those who are not able to travel to on-site groups. Teleconference group meets 2nd and 4th Thurs., 7-8pm.
Voice: 678-880-0411 or 1-800-451-9108 (Bill DeAngelo)
Online. Provides support for parents who are facing end of life issues with a child who has a brain tumor and to provide extended support for parents of children who have passed away after battling a brain tumor.
Online. 500+ members. Support group for parents of children with low grade gliomas of any time, including juvenile pilocytic astrocytoma (JPA), pilomxyoic astrocytoma (PMA), pleomorphic xanthoastrocytoma (PXA), fibrillary astrocytoma, oligodendroglioma or ganglioglioma, including those with multifocal or disseminated low grade gliomas. Group welcomes all location to include: brainstem, cerebellar, thalamic, hypothalamic, cerebral, tectal plate and optic pathway.
Online. 630+ members. Support for parents, family and friends of children diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a brainstem glioma (tumor). Medical professionals are also welcome.
Online. 300+ members. Support group of parents, friends and medical practitioners of children with brain tumors (medulloblastoma, astrocytoma, ependymoma, rhabdoid, choroid papilloma as well as others) who suffered from cerebellar mutism and posterior fossa syndrome after brain tumor removal. Members can access a 52 page web based resource guide for children with brain tumors.
The above information was 'verified' as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp
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