Bienvenidos al foro (English version) (Presentaciones)

Escrito por Web Admin ⌂ @, Barcelona, jueves, 16 de enero de 2014, 23:25 (1762 days hace...)

Wellcome to all,

I want to welcome the users of this forum. If you have got here is for some reason connected to this disease. Here is our bit try, we are collecting the low quantity of information about this syndrome to share with you in this website.

In future updates we will add the rest of the content, discuss all of the damages that may result (as they highly variable from one case to another) and possible treatments available (all treatment unsuccessfully).

Finally we want to give thanks to all the people around the world who have contacted us to share experiences. It's amazing see how people of different parts of the world contact with us.

In the directory Orpha.net says:

"Exact prevalence is unknown and approximately 20 cases have been reported to date."

Now we are in contact with 4 cases around the world:-)

Greetings!!


There is no disease so rare
that it does not deserve attention

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