Today is celebrated on World Rare Disease Day to raise awareness about infrequent pathologies for politicians, health professionals and the general public.
One in 2,000 babies is born with a rare disease. They are pathologies that due to their low frequency and ignorance, are little investigated and therefore, little treated. Among them are some pathologies that we have talked about in the blog such as cat meow syndrome, Angelman syndrome and others such as spinal atrophies, muscular dystrophies and bone dysplasia.
They are cases of unknown cause and difficult diagnosis. In fact, between the appearance of the first symptoms until it is diagnosed, about 5 years or more pass in which families go through a distressing medical pilgrimage.
Disseminating information about the around seven thousand rare diseases that affect three million people in Spain and 30 million in Europe is key to improving the living conditions of those who suffer from them.
Therefore, today, framed in the World Day of rare diseases, more than one hundred acts will be carried out throughout Spain under the slogan "We know what we want: Rare diseases, a social and health priority".
From Babies and more we contribute our grain of sand so that the voice of families affected by rare diseases is heard by more people.
