A recent study analyzed 20 films from the mass culture that, in some way, portrayed people living with rare diseases and found that these films rarely address the clinical aspects of these diseases. The plots focus more on the patient’s daily life problems. And if scientific elements appear, they are not there for medical education …
TATIANE VARGAS* Social justice is a civilizing principle linked to the conviction that everyone deserves the right to live with dignity. Its main axes of action are the fight against poverty and the fight against any discrimination that prevents individuals from enjoying a good and safe life. According to Pablo Dias Fortes, coordinator of the …
On the eve of the World Day for Rare Diseases, which is celebrated on the last day of February, a study carried out by the newspaper Correio Braziliense, commissioned by a coalition of patient associations and NGOs, reveals impressive data (in the worst sense) on the performance of the Legislative in the field of rare …
ROSANA MARTINEZ According to the WHO, a rare disease affects 65 people in each group of 100,000 individuals, less than one in every thousand people. 80% of rare diseases are genetic in origin. Rare diseases are usually chronic, progressive, disabling, and potentially fatal. In Brazil, it is estimated that 13 million people have a rare …
When we want to be familiar with the fascinating universe of Public Health, we need to acquire a new repertoire of strange but fundamental words if our goal is to promote social justice and the purpose of “leaving no one behind.” A keyword in our journey toward full citizenship is “equity.” What is equity? Equity …
How much is your life worth? Is it possible to put a price tag on your forehead? That’s what you’ll discover by reading this post.
There are phrases that those of us who have a disability hear all the time without realizing how unusual, indeed rude, they would be if they were directed at others. I am not referring to the daily questions about where our disability comes from, if it was due to illness or an accident, if we …
