“The economy, until now, has measured the price of everything and the value of nothing. This needs to change. Healthcare spending is treated as a cost rather than a long-term investment. Economic policy has not favored society.”
“The Universal Declaration of Human Rights is a miracle text,” said Volker Türk, UN High Commissioner for Human Rights. “When the world emerged from cataclysmic events, the Declaration established universal rights and recognized the equal worth of every person.”
The president-elect, Luiz Inácio Lula da Silva, will return to some themes linked to the Sustainable Development Goals (SDGs) of the 2030 Agenda. It is what can be seen when examining his government plan. O documento, de 21 páginas, contains guidelines for the “Program for the Reconstruction and Transformation of Brazil Lula Alckmin 2023-2026”. It …
CLÁUDIO CORDOVIL It was announced on March 21 the new composition of the National Council for the Rights of Persons with Disabilities (CONADE) for three years (2022-2025). Among the new advisors, representations linked to the universe of rare diseases: Febrararas , AFAG e Associação Brasileira de Síndrome de Williams (ABSW) e Retina Brasil . This is the conclusion …
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 …
