For the second consecutive year, journalist Patrícia Serrão, a professional from Empresa Brasil de Comunicação (EBC), was recognized with the Rare Women award. In the 2022 edition, she was joined by two other company colleagues, Mara Régia and Raíssa Saraiva, among the finalists in the Rare Journalist category. The three were remembered due to their relevant work in favor of the visibility of rare diseases in the country. Members of the Collective of Raros and PCDs of the EBC, the journalists competed for the award organized annually by the Instituto Vidas Raras since 2018. The initiative seeks to value inspiring women. The announcement of the result took place in a hybrid format, with a face-to-face event held in São Paulo and real-time transmission through the entity’s social networks, at the end of November. The contest highlighted women in 11 other categories. The winners were chosen by popular vote. This is the second time Patrícia Serrão has won the award. In 2021, the journalist had already been awarded the distinction in the same category. In this year’s edition, after the announcement of the finalists last month, the professional celebrated that three EBC colleagues competed for the laurel. “I’m happy with the award, especially the second championship, but just the nomination with two wonderful women and being all from the Raros and PCDS collective had already made me very happy”, says the victor. Patrícia Serrão highlights the engagement of all competitors in favor of the cause. “I admire and respect Mara Régia and Raíssa Saraiva a lot. Mara has nothing to say: it’s a huge honor to be able to work together with her. Viva Maria is a phenomenal program in the history of fighting for women’s rights. Mara too embraced the struggle of the rare ones”, she explains about the trajectory of the Nacional radio host. The journalist also reflects on the importance of dialogue and information in daily work. “Having a rare woman in a leadership position is extremely important and gives hope to the entire rare community. We are able to work and rise regardless of having some extra challenges due to the disease. Raíssa was the first coordinator who asked what my limits were and how we could work together. She always respected my limits, but never treated me as someone smaller because of them. That way, we built very special penthouses that I am very proud of”, recalls Patrícia. Awareness process The recognition obtained by Patrícia Serrão on the agenda of the rare ones comes in the wake of the need to expand the dissemination and clarification on the subject in the journalist’s own view. The debate is still recent and often incipient. “The term rare disease is new. The National Day of Rare Diseases was only created in 2018 and people are still learning what rare patients are”, says the journalist about the date that alerts to this issue on February 28th. “Brazilian society has already advanced a lot in the fight for people with disabilities (PCD) and now, little by little, it is learning about the needs of people with rare diseases (PCDR) and about invisible disabilities. Discussing the subject and talking about rare diseases is helping in this awareness and in the construction of a more inclusive society”, he defends. The EBC journalist reports on the moment she became aware of the condition. “I think that people in general enter into the rare cause when they find themselves with rare diseases or a close family member. It was like that with me. At the age of 30 I found out that I had Ehlers-Danlos Syndrome (EDS), a rare genetic disease that is difficult to diagnose”. Maternity and rare diseases Patrícia tells how she sought to create a more friendly and affectionate environment for exchanges between people who deal with the same challenges as hers in their routine. “I looked for other people with the same thing that I had and I discovered that there was no group of patients in Rio, so I created one”, she recalls. She explains how she proceeded from her experience with motherhood. “When I became a mother, I discovered that there was no room for mothers’ groups or EDS. Being a mother with a rare disease is a huge challenge. That’s why I created a national group of Mothers Sedian. experiences, information and a lot of welcome.” The journalist also comments on the period of uncertainty with the advent of covid-19. “In the pandemic came new challenges: health systems no longer know how to deal with the rare population on a daily basis, in the midst of a health crisis, the situation worsened. The rare cariocas needed to join together to request priority in vaccination. In this fight for rights, I met other wonderful women and we created the Rare Team that seeks to influence the fight for public policies for rare in Rio de Janeiro”, she points out. Among recent memoirs, Patrícia Serrão also addresses the demand for sensitivity to the cause at EBC. “During the pandemic, Rares and PCDS were not included in the company’s remote work standard. I realized that rares were still invisible in here and that we needed to work together. Thus, we created the EBC Raros and PCDS collective”, he concludes. About the award The Rare Women 2022 award is organized into 12 categories that feature incredible stories. The tribute outlines an overview of women’s work in favor of the theme. The participants tell their real experiences and the determination to transform not only their own lives, but also the collective reality. Knowing and publicizing the legacy of these women contributes to a better society. These people made their existence a mission to save other lives, regardless of their own problems. Dedication is responsible for much of the advancement of information on rare diseases in Brazil. The nominees represent many other women who strive to provide a friendlier everyday life for all people who have rare diseases. Even without any personal connection with the disease, some of them voluntarily undertake to clarify and share information on the subject. The contest elects by popular vote the three most nominated women in each category in the first phase of the awards. In its recent history, the Rare Women Award has already had many nominees and winners in a diversity that includes black, brown, indigenous, oriental women, in addition to all social classes and the LGBTQIA+ community. Promoted annually by the Vidas Raras Institute, the award aims to recognize the presence of women with a rare disease or a family member of a person diagnosed with a rare pathology in society. The award publicizes the work carried out by women who dedicate their lives to the rare ones in the country.
Agência Brasil
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