Re: The study is world wide

[Guest guest]

Cidny,

so do those from otside of the US have to attend this hospiotal or

can the tests etc be carried out in there own local hospitals? Do you

know? or should I contact them direct, as I need ALL the help i can

get and there is NO ONE here in Australia doing any kind of research

and we are lucky if we can find a doctor who knows anything about it

(even the so call TOP " connective tissue dyslpasia geneticist " was a

total looser who has OBVIOUSLY NEVER iin his life read the nosology

of EDS and ALL of it's types, or know that the severity is different

in different people as are the sympotms .

Thanks

Sharon

Shazinoz

> In reading the form again, they are taking people from all over the

world. So that answers that for some of you.

> Cindylouwho

>

>

[Guest guest]

Hi Sharon, I'm sure you'd have to come here. Doesn't hurt to email them and ask

your questions. This protocol is funded by the US government, so it would have

to be this facility. If you come and attend it, they will contact your Dr and

tell them what can be done to help you and your issues.

Cindylouwho

Re: The study is world wide

Cidny,

so do those from otside of the US have to attend this hospiotal or

can the tests etc be carried out in there own local hospitals? Do you

know? or should I contact them direct, as I need ALL the help i can

get and there is NO ONE here in Australia doing any kind of research

and we are lucky if we can find a doctor who knows anything about it

(even the so call TOP " connective tissue dyslpasia geneticist " was a

total looser who has OBVIOUSLY NEVER iin his life read the nosology

of EDS and ALL of it's types, or know that the severity is different

in different people as are the sympotms .

Thanks

Sharon

Shazinoz

> In reading the form again, they are taking people from all over the

world. So that answers that for some of you.

> Cindylouwho

>

>