A rare diseases organisation in Sweden

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A rare diseases organisation in Sweden

Postby merkap » Tue Apr 13, 2010 3:47 pm

Found a Swedish web site about rare diseases some months ago and registered to get the their news letter.

Searched for TMAU in the diagnosis register on the web site but TMAU was not to find.
Then I mailed the chairwoman for the organisation and asked some questions about her view regarding TMAU.
So far only complete silence - no reply of any kind.

When reading on the site they are telling about a "successful" visit at the royal castle and a meeting with Her Royal Highness Princess Victoria.
Picture of the chairwoman and the princess can be seen on the web site.
The organisation is also declaring the support to similar organisations in other countries.

The language is regrettable swedish.

Here is the register of rare diseases according to this organisation:
http://www.sallsyntadiagnoser.se/main.a ... 0&show=all

Edit> Sent the same mail to the chairwoman once again now, really want an answer from her....
merkap
 
Posts: 29
Joined: Sun Oct 11, 2009 5:01 pm

Re: A rare diseases organisation in Sweden

Postby merkap » Wed Apr 14, 2010 8:17 am

Got a mail reply from the chairwoman for Rare Diseases now.

She have not replied due to lack of time she says.
And she have never heard of TAIM. Yes, she wrote T-A-I-M as a response to my TMAU and the description ("fish odor syndrome" I gave her).
She was obviusly not enough interested to check out what TMAU stands for before answering my mail.

But I am welcome as a member...
merkap
 
Posts: 29
Joined: Sun Oct 11, 2009 5:01 pm


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