Congresso debate doenças raras e anomalias congênitas com especialistas de todo o Brasil
O IV Congresso Nacional de Doenças Raras e Anomalias Congênitas (Conamdracon) está sendo realizado até a próxima quinta-feira (28), no Espaço Cultural José Lins do Rego, no bairro de Tambauzinho, e conta com a participação de 650 pessoas, entre pesquisadores da área, profissionais e estudantes de Saúde de todo o Brasil. A programação completa pode ser conferida neste link.
Nesta terça-feira (26), aconteceu a abertura do evento, que é uma realização da Associação Paraibana de Doenças Raras (Aspador), em parceria com a Prefeitura de João Pessoa, por meio do Centro de Referência Multiprofissional em Doenças Raras. Nesta quarta-feira (27), a programação tem início às 8h, com a palestra ‘Os desafios do Aconselhamento Genético nas Doenças Raras’, do médico geneticista Henrique Gil da Silva.
“Pouco mais de dois anos atrás as pessoas com doenças raras ou em processo de diagnóstico não tinham onde ser atendidas, foi quando o nosso prefeito Cícero Lucena criou um centro de referência com vários especialistas em doenças raras que consultam, diagnosticam e tratam esses pacientes. Hoje, poder apoiar a realização de um evento dessa magnitude é muito importante para nossa rede e reforça o compromisso da Prefeitura em ofertar uma assistência cada vez mais especializada”, destaca o secretário municipal de Saúde, Luis Ferreira.
O IV Conamdracon conta com a participação ativa de diversos profissionais, incluindo médicos, enfermeiros, farmacêuticos, assistentes sociais, psicólogos, dentistas, fonoaudiólogos, terapeutas ocupacionais, educadores físicos, nutricionistas, psicopedagogos, bem como estudantes de graduação e pós-graduação.
“Enquanto profissional da fisioterapia é de grande valia participar desse evento para conseguirmos entender mais sobre esse meio e as condições desses pacientes raros, além de ampliar nossos conhecimentos e melhorar nossa capacidade enquanto profissionais. Tenho certeza que a participação neste congresso vai ser um diferencial para entender, acolher e até identificar um paciente raro em nosso serviço e dar o encaminhamento necessário para um acompanhamento especializado que é ofertado dentro da nossa rede”, cometa Thaíse Moura, fisioterapeuta da rede municipal de saúde.
Além do corpo técnico, também participam do Conamdracon mães e familiares de pacientes do Centro de Doenças Raras, da Prefeitura de João Pessoa. “Quando meu filho nasceu, há cinco anos, não tínhamos nada disso, não tinha congresso, não tinha centro e ver essa evolução em pouco tempo é muito especial. Nos dá uma visão de que o futuro vai ser muito melhor e que outras crianças, e até nós mesmos, não precisaremos viajar para tão longe para uma assistência especializada”, celebra Gabrielle Lino, mãe de Nicholas, 5 anos, diagnosticado com Sequência de Pierre Robin e em processo de investigação de outras.
O IV Conamdracon segue acontecendo de forma híbrida, sendo possível acompanhar toda a programação por meio do canal do YouTube.
Solenidade de abertura – O primeiro dia do evento contou com a participação do prefeito de João Pessoa, Cícero Lucena, que anunciou a construção do Centro Especializado em Reabilitação (CER IV), um equipamento ainda mais amplo e capaz de atender diversas especialidades.
Também estiveram presentes o procurador do Ministério Público da Paraíba, José Guilherme Ferraz; presidente do Conamdracon, Tereza Tavares; vice-presidente da Federação Brasileira de Doenças Raras, Lauda Santos; presidente da Sociedade Brasileira de Pneumologia e Tisiologia, Margareth Dalcomo; presidente da Associação Paraibana de Doenças Raras, Murilo Araújo; presidente do Conselho Municipal de Saúde, Mariah Marques; secretário executivo de Gestão de Rede de Unidades de Saúde da Secretaria de Governo de Estado, Patrick Aurélo; e diretora-geral do Centro de Doenças Raras, Saionara Araújo; e o professor de Genética da USP Ribeirão Preto, João Monteiro de Pina Neto.
Centro de Referência Multiprofissional em Doenças Raras – Administrado pela Secretaria Municipal de Saúde (SMS), é o único da região Nordeste e atende cerca de mil usuários por mês. No serviço, são atendidos pacientes com doenças raras ou que ainda estão em processo de fechamento de diagnóstico.
Para receber assistência, o usuário deve ser encaminhado, via regulação, pelas unidades de saúde da família (USFs), unidades de pronto atendimento (UPAs), Hospital Universitário Lauro Wanderley (HULW) e outros serviços que, por ventura, atendam pacientes raros.
O Centro de Referência Multiprofissional em Doenças Raras está localizado na Rua Esmeraldo Gomes Vieira, nº 362, no bairro dos Bancários. Para agendamentos e outras informações, é possível entrar em contato com o Centro através do número 3213-7620.
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Innovations on the Indian Hospitality sector will be estimated and evaluated on completely different levels.
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Dabney, William M. (1954).
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This question is centrally concerned with the study of political economy, theorizing how governments make public policy.
The Mexican federal authorities’s credit score was downgraded by S&P International Scores to BBB.
Feb. 21, 2008. (Sept.
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Different downhill runs had been added, and Mount Revelstoke hosted many international competitions in the first half of the century.
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1997 for the primary time in over 60 years, and in 1999 its export quota of 20,000 tons was filled.
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A. Leading Questions: When interviewers use leading questions that suggest a particular answer or contain false information, witnesses may unconsciously alter their recollections to match the suggestions, even if the details are inaccurate.
The tradition originated in 1999, when Henry Taylor and Sam Green (house owners of the resort), decorated a garbage can with paint, lights, and pine cones, and dropped it from the roof of their building to mark the brand new millennium.
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After a period you need to shift towards primary research as it gives current and direct knowledge about rapidly changing market trends.
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White presents a pawn for speedy development, in addition to to attack Black’s central outpost.
National Weather Service. National Oceanic and Atmospheric Administration.
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The overall business outlook for an industry looks optimistic during the economic recovery phase.
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