For all you located in the USA - a us... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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For all you located in the USA - a useful resource - in case it is of interest!

MaryF profile image
MaryFAdministrator
10 Replies

Hi there.

Most of you will have at some point come across this very professional organization, I often post this for people under their comments, but just in case you have missed the contents etc are new, here you go.

americanaps.org/

Mary F.

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MaryF profile image
MaryF
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10 Replies
Renae profile image
Renae

Mary, It kind of makes me not feel welcome here at this site, although I know that was not your intention.

I have visited the site you posted, but I don't like a site that asks for money.

Renae

MaryF profile image
MaryFAdministrator in reply toRenae

Oh hi there, no not meant like that at all, We want all of you on this site very much.... and I quite often get asked for contacts and information in USA, I get quite a few private messages, just put it on here to be of use really.. as other people had been posting different contact sites in USA... and this was the only one I had heard about. Please don't go away... it was literally a brief information post xxxx X

GinaD profile image
GinaD

I have spent time on the other US forum -- APLS --- but problem is -- every time I post I get a slew of sexual offer emails from strangers, who have the impression that because I list bicycling as a hobby (the kind where you pedal) the assumption is made that I am gay and looking for connections. Sigh.

MaryF profile image
MaryFAdministrator in reply toGinaD

Oh dear that sounds DREADFUL very unprofessional, lack of moderation I would assume xxx

GinaD profile image
GinaD

Exactly.

Leigha profile image
Leigha

Hi Mary,

Thanks for this. Had seen this site before but it is lacking in what it contains and the support group it mentions has only 71 people. You, on the other hand, rock!

MaryF profile image
MaryFAdministrator in reply toLeigha

Thanks: M x

Mommaleda profile image
Mommaleda in reply toLeigha

Been on that one too. It's nothing like this one..love this one!!:) plus the USA site doesn't seem to know what in H is going on... Seems like its years behind. I cant even find doctors here that know of aps. Sorry if I said too much, honesty is a trait of mine that can be taken as a pro OR con

xxx to all

paddyandlin profile image
paddyandlin

Hi All,

there is a wealth of suppoort sites to have a look at as mary said this is just one site, some are good some are bad some are ugly (Sorry bad Joke) but as we say if your not happy the HSF HU doors always open.

paddy

Mommaleda profile image
Mommaleda

Thank you mary

Looked again, under construction in most areas and no forum.

xxx to all

Mommaleda

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