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Promoting Brain Injury Survivor Self-Advocacy and Collective Advocacy


Neurological Conditions

The NHCC is located in Toronto, Ontario, Canada. As of November 2010, 23 Canadian agencies are involved. They are working together to improve the lives of people living in Canada who have chronic neurological diseases, disorders and injuries. They are developing a Canadia National Brain Stragegy.
http://www.mybrainmatters.ca
(Clicks: 11; Comments: 0; Listing added: Nov 19, 2010) Listing Details Report Broken  Listing
We at the Brain Injury Network survivor advocacy organization recommend the retirement of the term Persistent Vegetative State. In lieu of PVS, we ask that the medical community adopt the term “Persistent Wakeful but Unaware State” (PWUS). This term includes the requisite components of the diagnosis which are wakefulness yet unawareness. In the alternative, we have noted that on occasion the term Persistent Unaware State (PUS) is used, but it is not quite as illustrative as PWUS, in our lay persons’ opinion. However, it is clear to us, the brain injury survivor community that neither PWUS nor PUS would be so insensitive, dehumanizing or charged a term as PVS.
Source: Brain Injury Network
http://braininjurynetwork.org/publicpolicy/pvstopwus.html
(Clicks: 8; Comments: 0; Listing added: Jun 19, 2011) Listing Details Report Broken  Listing
This coalition encompasses over 50 brain and spine charities in England.
http://www.neural.org.uk/
(Clicks: 7; Comments: 0; Listing added: Nov 19, 2010) Listing Details Report Broken  Listing
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