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Promoting Brain Injury Survivor Self-Advocacy and Collective Advocacy


Forums, Online Communities, Chat

Brain Injury Forums Online are listed in this section. However, online forums, online communities, chat rooms, social communities, groups and web sites that engage in Patient Data Harvesting, Patient Recruitment, or Psychological or Other Medical Research without adequate disclosure and/or permission of the participants are unlikely to be listed here. And if by accident any such entities are listed here, the Brain Injury Directory apologizes. We try not to list such entities, but sometimes they are doing such a good job of hiding their true purpose, which is to collect data about survivors for sale, that we cannot see that in order that we might alert you. Also, in additional cases, it may not be that the administrators wish to harvest data about individuals with brain injuries for sale, but they are not employing any kind of safeguards (example: good moderation practice, etc.) so the online entity is also not particularly safe from spammers, viruses, etc. 

So, from your side, individual with a brain injury, may we alert you to the fact that in general, when you are surfing the net or participating in social communities, chat rooms, groups, blogs, etc. online that it is always wise to find out exactly who operates a web site, online community, or social community online prior to participating in the community. If you are a survivor, please make sure that the administration of the online entity takes care to protect your confidential and private medical information and does not harvest data about you for sale to third parties without your knowledge, approval or consent. Also, maintain good security software, anti-virus programs and firewalls on your own computer to help protect yourself and your computer from Internet threats.
 
Partner
This is the first ever USA national and international brain injury (abi which includes tbi) survivor policy and collective advocacy online forum. This online social community has developed, implemented and disseminated public policy on behalf of the brain injury survivor community since 2006. Everyone involved is a brain injury survivor and a brain injury survivor advocate. This is also a chat; peer support; information, education and referral online social community. This group is survivor operated and survivor-led. The owner/moderator is a tbi (traumatic brain injury) survivor. SABI is affiliated with the Brain Injury Network, a Section 501(c) (3) nonprofit advocacy organization and network operated by and for survivors of brain injury. Topics discussed include survivor priorities, brain injury survivor human rights, best practices for service provider organizations, government public policy, problems with insurance, community access, health care costs, basic safety-considerations, patient empowerment, patient advocacy, community reintegration, post tbi, Post TBI Syndrome, assistive devices, medical research standards, privacy and safety on the Internet, assessing social communiities, standards for college programs for students with brain injury, sport injuries, children and brain injury, school and brain injury, and a host of other topics.
http://health.groups.yahoo.com/group/survivoracquiredbraininjury
(Clicks: 220; Comments: 0; Listing added: Feb 2, 2008) Listing Details Report Broken  Listing
Please help brain injury survivor advocates raise public awareness about issues of importance to our survivor community. This cause is related to the work of the Brain Injury Network is a 501(c) (3) nonprofit entity. The Brain Injury Network represents advocacy by and for brain injury survivor advocates.
http://apps.facebook.com/causes/221624/47517560?m=6d54c0aa
(Clicks: 9; Comments: 0; Listing added: Nov 30, 2009) Listing Details Report Broken  Listing
ABINews2U is a Yahoo! group for Survivors, Caregivers and Service Providers. The owner/moderator is a survivor. She highlights recent research findings. News articles. Interesting study articles related to brain injury topics.
http://health.groups.yahoo.com/group/ABINews2U/
(Clicks: 10; Comments: 0; Listing added: Jun 23, 2008) Listing Details Report Broken  Listing
Brain Injury Networks' Acquired Brain Injury group on Facebook.
http://www.facebook.com/home.php?sk=group_175429979161365
(Clicks: 20; Comments: 0; Listing added: Jan 18, 2011) Listing Details Report Broken  Listing
"BrainLine is a national multimedia project offering information and resources about preventing, treating, and living with TBI....
BrainLine serves anyone whose life has been affected by TBI. That includes people with brain injury, their families, professionals in the field, and anyone else in a position to help prevent or ameliorate the toll of TBI."
"BrainLine is funded by the Defense and Veterans Brain Injury Center, the Primary Operational TBI Component of the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, through a subcontract award with the Henry M. Jackson Foundation for the Advancement of Military Medicine."
Address:
BrainLine.org
WETA
2775 South Quincy Street
Arlington, VA 22206
Phone: 703.998.2020
E-mail: info@BrainLine.org
http://www.brainline.org
(Clicks: 20; Comments: 0; Listing added: Nov 30, 2009) Listing Details Report Broken  Listing
Forum for (almost) everyone advocating for survivors. The owner/moderator is a survivor.
http://health.groups.yahoo.com/group/feasible/
(Clicks: 3; Comments: 0; Listing added: Nov 30, 2009) Listing Details Report Broken  Listing

The Brain Injury Network, a USA national and international nonprofit organization operated by and for brain injury survivors, is pleased to announce that two new public policies were approved by the Board of Directors 12-11-10. The board members are brain injury survivors. These are the policies people with brain injuries would like to see promoted by the public sector. This is a link to the policy entitled: Privacy Settings on Web Sites Designed for Brain Injury Survivors
http://braininjurynetwork.org/publicpolicy/privacysettings.html

http://braininjurynetwork.org/publicpolicy/privacysettings.html
(Clicks: 6; Comments: 0; Listing added: Jan 8, 2011) Listing Details Report Broken  Listing
Brain Injury Network Article: Protect Your Privacy and Guard Your Confidential Information On-Line!
Summary: If you want to join social on-line communities, check them out, thoroughly, before you join. Also, find out what kind of credentials the administrators of the site have, if you can. And when in on-line groups or communities:
(1) Sign up using an alias name.
(2) Use a private profile.
(3) Do not give out your address, phone number, or birth date.
(4) Do not use your real name or your parent’s or other relatives’ last names in discussions.
(5) Don’t use your primary email address, especially if it contains your actual name. Create easily disposable secondary (subaccount) email addresses to use instead.
(6) Don’t share medical data about yourself by filling out on-line forms from social communities. For example, don’t share your insurance particulars, your doctor’s name,
your medication list, etc.
(7) If a site allows you to modify your privacy and archival settings (a good sign) check them, because chances are the default setting is to allow your content to be
accessible to the entire Internet community, and you may wish to tighten up who may view your posts.
(8) Just remember that if you share any content with anyone, anyone at all, he or she will be able to share your material elsewhere (even though that would be impolite it
happens all of the time), so be careful what you write on the Internet. You never know where it will end up, and once you have written something it may be on the
Internet for eternity.

Be careful! Be watchful. Be wise.
http://braininjurynetwork.org/protectyourprivacy.html
(Clicks: 6; Comments: 0; Listing added: Apr 19, 2010) Listing Details Report Broken  Listing
@ SABI
SABI means "Survivor of Acquired Brain Injury" and also "Survivor Advocate regarding Brain Injury". This term was coined by abi survivor (and tbi survivor) Sue Hultberg in the year 2000. The term is used as a rallying term for survivor advocates who are associated with the Brain Injury Network, an international and USA national brain injury survivor advocacy non-profit organization that operates from Santa Rosa, California. The Brain Injury Network hosts several SABI advocacy forums online. SABI advocates are interested in the creation and dissemination of survivor public policy. SABI advocates think in terms of a survivor-driven agenda.
http://sabi.name
(Clicks: 240; Comments: 0; Listing added: Apr 22, 2010) Listing Details Report Broken  Listing
This is an international survivors-only advocacy, chat and peer support forum board. The owner/moderator is a survivor. SABI is affiliated with the Brain Injury Network, a Section 501(c) (3) nonprofit organization operated by and for survivors of brain injury.
http://health.groups.yahoo.com/group/survivoracquiredbraininjury/
(Clicks: 2; Comments: 0; Listing added: Nov 30, 2009) Listing Details Report Broken  Listing
This is a SABI (Survivor Acquired Brain Injury) social community which exists on Facebook. This SABI is affiliated with the Brain Injury Network (BIN), an advocacy organization for people with brain injuries. Facebook is a fun place with many games, groups, causes and activities. People casually share their names on Facebook. If you are comfortable with that, this SABI community exists on Facebook and so do many other brain injury groups. Note: you are not required to use your real name on Facebook. You can use an alias name if you are so inclined even on Facebook. The Brain Injury Network (BIN ) also recommends that you be careful not to share your most private, confidential information. For example BIN recommends that you not share your address, your telephone number, or your most intimate financial or medical details, etc. on Facebook or in other online social communities.
http://www.facebook.com/inbox/?compose=1&id=41502341#/group.php?gid=7355738442
(Clicks: 15; Comments: 0; Listing added: Jun 27, 2009) Listing Details Report Broken  Listing
Stroke_Helps is a Yahoo! Group for stroke survivors and caregivers. The owner/moderator is a survivor.
http://health.groups.yahoo.com/group/Stroke_Helps
(Clicks: 3; Comments: 0; Listing added: Jun 23, 2008) Listing Details Report Broken  Listing
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