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Post Info TOPIC: Building a community


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Building a community
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Hi fellow biid people.

Of and on I have been posting things here, and on other biid fora and platforms. It seams hard though to keep a lasting connection and keep the conversation flowing. I have some online contacts with people with biid or related (devotee) and frequently have mail/chat contact with them. But really to built a stronger community is what I think would really help our lonely roads. For this I think there are many possible strategies,

á

I think to really feel accepted these contacts are very important. But even more effective than online contacts would be real contacts. We will have to keep things save by meeting in public places like a a coffee shop or library, and slowly take it from there.

á

Since our "disorder" seems to be so rare, we can not expect to have the luxury of finding like minded people around the corner. So I could imagine, as a goal on the horizon, to have a community of people worldwide. People who would be open and excepting of biid and the related issues (devotee, pretending). Maybe even setting up an international Biid foundation, to help the community building, organize meetings and share and collect relevant information of research and treatments.

á

As a start it would be good to have a general understanding where everybody lives. I will open a separate post for that. But first of all what do you guys think of this?

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Yours,

John/Jan



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Jan


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Hi John,á

á

Appreciate your effort. This is a good move.á

á



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Hi John,
Sound nice! God idea........

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Excellent idea,

1st from France

Where are papers to sign ? :p

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Want to be C6 or C7 (just to stay independant)

And in power wheelchair. Because power wheelchair can up to 7mph in 1h

Few humans do 7m in 1H

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Hi all,
Posted the same message on the yahoo group: fighting it. Here people have started telling their location and somebody started a file to get a database going.

As for a Biid foundation I am still thinking about how to structure it.. Any ideas are welcome.

Yours,
John

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Jan


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Also my location is Netherlands close to Amsterdam.

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Jan


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All for people with Biid connecting more, the more of us that come forward the more it would start to be recognized. I would have thought by now it would be more understood by doctors and not swept under the rug.

United States

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Tay



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Excellent idea thats you have to want to develop the biid community (wannabe and openmind biid)
I think a lot of people will say (like me) : i'm not alone.
I always though thats its so difficult to share our experience, and talk about our feeling
Where have i to sign up
Second in france, not so far from swiss ant italy border

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''maybe our incompleteness will make us complete''á

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