Cariocas who look at Christ the Redeemer this Tuesday (28) will see it illuminated with pink, green and blue colors due to the World Day for Rare Diseases. The colors were chosen because it is a symbol of these diseases. Other parts of the city, such as the Tiradentes and Guanabara palaces, will also be illuminated. In another event to mark the date, the State University of Rio de Janeiro (Uerj) will promote a lecture on rare diseases at 11 am, at the PPC/Uerj study center. Closing the week, the Ferris Wheel in Rio will be illuminated on Saturday (4) in honor of the rare sick. The tribute, which aims to make society aware of the cause of rare diseases, is an initiative of the president of the Brazilian Association of Narcolepsy & Idiopathic Hypersomnia, Ana Braga. She also coordinates the Raras Team, a group of women who fight for public policies for this population in Rio. “These events are important for rare people to understand that they are not alone. Diseases may be rare, but together we are many. We need to talk about the importance of early diagnosis, acceptance and the fight for the rights of people with rare diseases”, she says. . The official Rare Disease Day is February 29th, so it only happens once every four years. This year, as it is not a leap year, the celebration took place throughout the month of February, with a peak on the 28th. The exact number of rare diseases is not known. It is estimated that there are between 6,000 and 8,000 different types worldwide. Data from the non-governmental organization Eurodis (Rare Diseases Europe) show that 73% of rare diseases result from genetic factors, with the rest arising from environmental, infectious, immunological causes, among others. Although they are individually rare, as a group they affect a significant percentage of the population, which results in a relevant health problem. Rare diseases are characterized by a wide range of signs and symptoms, which vary not only from disease to disease but from person to person affected by the same condition. Relatively frequent manifestations can simulate common diseases, making diagnosis difficult, causing high clinical and psychosocial suffering to those affected, as well as their families. Early diagnosis and access to treatment ensure a better quality of life for patients. If you or someone you know has persistent symptoms, with no apparent or unrelated cause, consider the possibility of a rare disease. In Rio, look for a family clinic and ask to be referred by Sisreg to the Rare Disease Outpatient Clinic at the Pedro Ernesto University Hospital (Hupe). In case of any suspicion, never self-medicate or jump to conclusions. Enlist the help of support groups. Instituto Vidas Raras provides the phone number 0800 006 7868 to help with guidance and the search for these groups. Check out the podcast Histórias Raras, in three episodes, produced by Radioagência on the subject.
Agência Brasil
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