The presence of rare diseases at the Oscars 2015 

The presence of rare diseases in the media, fortunately, is increasingly day by day. Especially at this time, where before and after the 28 th of February the acts and commemorative events are spreading around the worldwide.

Although rare diseases are more common than we think, in Spain as a whole the number of patients is comparable to the the amount of people with diabetes, but their presence on celluloid is less common. And rarer still is that among the winning projects or candidates for a prize Oscar are related to stories related to this topic. Nevertheless, we have a beautiful and a historical background with the film “Lorenzo’s Oil”, which in 1992 won two Academy Award nominations.

In the last edition of the Oscrs one of this mentions was for a very special documentary: “Our curse“. A document containing real images of a family with a baby affected by Ondine syndrome or congenital central hypoventilation. The content of the audiovisual is regarding reflections of the parents, moments of the homecoming, when they integrated into a life “more normal” their baby … real as life itself. Ondine syndrome is a rare disease in which there is no adequate central stimulus, nervous system, so that breathing occurs.

The audiovisual remains an excellent resource for disseminating what is a rare disease, from the time of diagnosis, or even in the waiting process, and as in the day by day when the disease courses.