Re: How is it to be rare? Arto

[Guest guest]

How wonderful Arto,

I wish I could be there and hear your speech. I know you will do a great job.

I think its wonderful to get the word out about RP & the research that needs to be done. RP needs more funds for research, and hopefully oneday soon a cure.

I think telling them about the foundation will be a great asset. It has helped so many who have questions and problems they face everyday with RP.

You know as well as we all do, the fears we have when first d/x. Our internet site helps to calm those fears and answer a lot of those questions that doctors simply ignore.

I know I have learned more from hearing what works for others here and other stuff about RP than anywhere else.

Please let us know how your speech goes. This is wonderful news!

Love

Lu

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.