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Petition Idea


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I have been reading a lot of people's posts on this Gd. I am from the Va. group. It is so frustrating to realize that everyone is treated generally the same way and that nothing is being done about this.

I was wondering if there was any way that we could get a petition together to somehow make a difference in the opinion of POTS. I was wondering if anyone would know where to start and if they thought that this could benefit us??

What would we put in it?

I was thinking that we could somehow get it to be recognized as an official rare illness again, that we should be able to be approved for disability without having to be denied several times and end up having to get a lawyer in order to be approved, etc.

Anyone have any suggestions?

Frances

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Hi Frances!

I thought that the EDNF group had a good idea - they have created CD-ROMs and brochures detailing EDS and distributed them to doctors, dentists, etc. I think education is a great way to get the word out about pots. And if doctors understand pots more fully I think the patients would have more credibility.

http://www.ednf.org/literature.html

Pam

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I agree with you there. Do they have these types of cd's for people with pots? If not, how would we go about getting them made?

I wonder if these business cards could somehow help us too.

who knows?

Frances

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