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| Dani Martinez |
this morning reviewing the mail the first thing I encounter is his article, so suddenly, and my first reaction was to remember friends and relatives of you, of course, but since they do not have the guilt of his little touch I reply by letter.
just celebrated the World Day for Rare Diseases, a day to reach the public the added problems of getting a disease, added by the health care system, pharmacists, social services, people, as I said in the Senate Juanjo with Princess Letizia, "We are afraid" - added, too, so media.
Media we are useful and effective in getting our message: a rare disease, is named for its low prevalence, their ignorance at all levels. And this is what makes us "more" sick, lack of public awareness of our daily suffering.
Well, when it seemed that we had "won" through the media talking about, you can find one with your item, and our daily suffering that you take it as a joke, calling rare disease does not know what attitude of the political class, throwing you overboard all we thought we already achieved.
Daniel Martinez, President of AMER
Rare Diseases Association molinense
rare diseases - GARCÍA MARTÍNEZ
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