Times are getting better. I guess the internet does make the world seem a much smaller place in many ways. Its used as a resource and a tool to promote education and knowledge. But if one was to try to catalogue the contents of the Internet, they would not be able to - its impossible because there is so many duplications and variations made of the same thing. The are broken links and there are mis-named links. Websites are not controlled by a huge organisational database registry, therefore what actually can be tracked in detail.
Web designers and analysts are so much more knowledgeable in this area, once again because the internet has been it far more easier to communicate and work together.
Narrowing things down, why don't people know about it? It, being TBS.
TBS is like many hundreds of syndromes. They are not widely known about because not much is known about them. Is the information promoted, not very well promoted in the community area for where an interested person just diagnosed with it would look, then again not much is listed in the area relational to where you would find medical discoveries. To start learning, check out our little buddy on his very own Blog Site - Cortland's Story.
Countries now are working better together, which is a fantastic achievement in itself. With this continuing trend and with the ability for groups such as ours to promote themselves, the word will definitely be reaching far more corners than ever before.
Where does this leave us ? We are still receiving membership requests from new people wanting to find out about 'it'. We are now broadening in our promotion of the TBS area and making it so much easier for genuine people newly diagnosed or who have over time been diagnosed and are still searching to find us more easily. Lets keep it up. If we know of people who want to learn, or need to learn, those struggling to find out how to learn, share with them what you find. Why? because I was one of those people that didn't know about 'it' either, and that believe it or not is a horrible, isolated and frustrating feeling. Now lets change that for the better :)
Medical staff are finding more about this syndrome, why? because our wonderful members and supporting researchers are making it known. What a team - good stuff !
Membership is free, specific news items will be grouped within the private area, however, I should clarify that all common news articles will be displayed here. If you see some news here and wish to tell someone about it - go right ahead - you're welcome :)
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