Rare disease in one of the major newspapers of payed circulation in Brazil

Here in Brazil we have three major newspapers of payed circulation, according to IVC, an institute that measures circulation of media (ranking of 2014–2015). The first is ‘Super Notícia’ (220.971, media of circulation), then ‘O Globo’ (183.404) and ‘Folha de São Paulo’ (175.441). These numbers are available here.

I was curious at first to see how many articles they published about one rare disease that is object of my specialization (Master of Science/University of Brasília/Brazil) — Mayor-Rokitansky-Küster Hauser (MRKH). Look these numbers in 'Folha de São Paulo': there are only 4 articles about it. If I tag "rare disease", only 149 articles.

It's something to think about it. What is the credit given to diseases that even called rare, many people are suffering of it in all the world? Newspapers should be compromised to people, specially, people that suffer a lot.

It's amazing that even now, with all technology, social networks; they can't see that the most important thing are the relations that we establish with people. One powerful channel is media, they can connect us, open communication, change our agenda and priorities, and sometimes, make us wonder about some invisible facts.

But, hey, look, maybe Bourdieu was right. Journalism is more then the logic of market share or money or journalist ego’s. It should think more about these invisible facts. They are present in many ways, even in health, the rare is present. For instance, if you think about MRKH, it is not there, but it is there. It is an invisible and present at the same time.

Makes me wonder…

At the same time when you think that the ordinary citizen is now a stakeholder…

Makes me wonder again.

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