Self Help Clearinghouse
Brain Injury / Brain Tumor / Coma
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. Brain Tumor Society
National. Founded 1989. Committed to finding a cure for brain tumors. Improves the quality of life for brain tumor patients, survivors and caregivers through research, education, support programs and services. Maintains a database of brain tumor support groups, funds research, newsletter, e-newsletter, comprehensive resource guide and brain tumor Fact Sheets.
Write:
Brain Tumor Society
124 Watertown St., Suite 3-H
Watertown, MA 02472-2500
Voice: 1-800-770-8287
Fax: 617-924-9998
Website: http://www.tbts.org
E-mail: info@tbts.org
Verified: 5/3/2007American Brain Tumor Association
National. Founded 1973. Dedicated to eliminating brain tumors by funding and encouraging research and providing free patient education, materials, pen pal program, newsletter, publications and resource listings. Support group referrals and assistance in starting groups.
Write:
American Brain Tumor Assn.
2720 River Rd., Suite 146
Des Plaines, IL 60018
Voice: 1-800-886-2282
Fax: 847-827-9918
Website: http://www.abta.org
E-mail: info@abta.org
Verified: 5/3/2007Brain Injury Association, Inc.
National. 42 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.
Write:
Brain Injury Association
1608 Spring Hill Rd., Suite 110
Vienna, VA 22182
Voice: 1-800-444-6443
Fax: 703-761-0755
Website: http://www.biausa.org
E-mail: braininjuryinfo@biausa.org
Verified: 10/3/2007Coma Recovery Association
National network. Founded 1980. Support and advocacy for families of coma and traumatic brain injury survivors. Provides information, referrals and support group for family members and survivors. Quarterly newsletter and yearly conferences for families, brain injury professionals and survivors.
Write:
Coma Recovery Association
8399 Republic Airport, #106
Farmingdale, NY 11735
Voice: 631-756-1826
Fax: 631-756-1827
Website: http://www.comarecovery.org
E-mail: inquiry@comarecovery.org
Verified: 11/13/2007Acoustic Neuroma Association
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 ($35/yr), nationwide support group network, biennial national symposium and patient information booklets.
Write:
Acoustic Neuroma Association
600 Peachtree Parkway, Suite 108
Cumming, GA 30041-6899
Voice: 1-877-200-8211
Fax: 1-877-202-0239
Website: http://www.anausa.org
E-mail: info@anausa.org
Verified: 10/15/2007National Brain Tumor Foundation
National. Founded 1981. 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 listings, a quarterly newsletter, conferences, literature, support line, information and referrals. Assistance in starting and maintaining support groups.
Write:
National Brain Tumor Foundation
22 Battery St., Suite 612
San Francisco, CA 94111-5520
Voice: 1-800-934-2873
Fax: 415-834-9980
Website: http://www.braintumor.org
E-mail: nbtf@braintumor.org
Verified: 5/1/2007Children's Brain Tumor Foundation, Inc.
(BILINGUAL) National network. Founded 1988. Provides a Parent-to-Parent 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 Week at Camp Sunshine, newsletter, annual teleconferences (available for replay on website) and funds research.
Write:
Children's Brain Tumor Foundation
274 Madison Ave., Suite 1004
New York, NY 10016
Voice: 1-866-228-4673
Fax: 212-448-1022
Website: http://www.cbtf.org
E-mail: info@cbtf.org
Verified: 5/2/2007BRAIN TRUST, The Healing Exchange
Online. Founded 1993. Mission is to exchange information and support 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.
Write:
The Healing Exchange BRAIN TRUST
186 Hampshire St.
Cambridge, MA 02139-1320
Voice: 1-877-252-8480
Fax: 617-876-2332
Website: http://www.braintrust.org
E-mail: info@braintrust.org
Verified: 10/27/2007Musella Foundation
National. Provides emotional support and exchange of information for patients with various brain tumors and their families. Information on research, medication and clinical trials. Chat rooms, support groups, video library and other resources.
Write:
Musella Foundation
1100 Peninsula Blvd.
Hewlett, NY 11557
Voice: 1-888-295-4740
Fax: 516-295-2870
Website: http://www.virtualtrials.com
E-mail: musella@virtualtrials.com
Verified: 10/3/2007Spouses of Brain Tumor Patients
Online. Support for spouses of brain tumor patients. Opportunity to connect with others who understand the emotions and frustrations involved with a spouse who has a brain tumor. Message board and chat room.
Website: http://www.bradsupdates.com/care.html
Verified: 4/27/2007The Brain Injury Information NETwork (TBINET)
Online. Various support group email lists for brain injury, stroke and other 'medical' related issues. Also provides lists for caregivers, family and friends.
Website: http://www.tbinet.org
Verified: 4/27/2007Brain Tumour Foundation of Canada
Online. Founded 1982. Virtual support group includes online chat room, message board and moderated chat events. Support groups meet monthly in many Canadian communities.
Write:
Brain Tumour Foundation of Canada
620 Colborne St., Suite 301
London, Ontario, CA, N6B 3R9
Voice: 519-642-7755
Fax: 519-642-7192
Website: http://www.braintumour.ca
E-mail: braintumour@braintumour.ca
Verified: 11/2/2007The 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
If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org
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