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How is it to be rare?

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I have a possibility to tell, how it is to be rare in a congress of

Reumaliitto (the Arthritis Foundation of Finland) in May. I´m an opening

speaker in the part of rare diseases.

I can tell my own feelings and experiences as I will, and I think there

is enough to say for ten minutes, but if any of is willing to give some

tips or just tell your own views, I could " speak louder " .

In any case I´ll tell about our RP-list, not only to be polite to you.

:-)

I could have spoken more of our list, because they asked, too, if I

could tell about possibilities of internet for a disabled, but I

recommended a more active and experienced person for this.

Thank´s her I´m with you, because she wrote on all possible message

boards and then Janet/Kim, Jim, Sue, , Patty, ......... contacted

me.

Internet is a possibility for us, but some kind of threat for docs in

these questions. ???

Any hints for closing words???

Kiitos!

Arto

PS. It´s in Finnish.

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