{"id":3070,"date":"2023-09-26T09:33:05","date_gmt":"2023-09-26T12:33:05","guid":{"rendered":"https:\/\/www.zalikafarmaceutica.com\/?p=3070"},"modified":"2024-12-09T11:00:29","modified_gmt":"2024-12-09T14:00:29","slug":"xiv-forum-nacional-de-politicas-de-saude-no-brasil-doencas-raras","status":"publish","type":"post","link":"http:\/\/www.zalikafarmaceutica.com\/pt\/2023\/09\/26\/xiv-forum-nacional-de-politicas-de-saude-no-brasil-doencas-raras\/","title":{"rendered":"XIV F\u00f3rum Nacional de Pol\u00edticas de Sa\u00fade no Brasil \u2013 Doen\u00e7as Raras"},"content":{"rendered":"

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Participa\u00e7\u00e3o Zalika no XIV F\u00f3rum Nacional de Pol\u00edticas de Sa\u00fade no Brasil sobre Doen\u00e7as Raras<\/span><\/h2>\n

No dia 14 de setembro, Bras\u00edlia foi palco de um evento not\u00e1vel: o XIV F\u00f3rum Nacional de Pol\u00edticas de Sa\u00fade no Brasil – Doen\u00e7as Raras<\/strong>. Este f\u00f3rum, sediado no audit\u00f3rio Senador Ant\u00f4nio Carlos Magalh\u00e3es do Interlegis, no Senado Federal, foi promovido pelo Instituto Brasileiro de A\u00e7\u00e3o Respons\u00e1vel e marcou o retorno das atividades presenciais do Programa A\u00e7\u00e3o Respons\u00e1vel, que estavam suspensas desde 2020 devido \u00e0 pandemia.<\/p>\n

O evento reuniu parlamentares, m\u00e9dicos, especialistas, e l\u00edderes dedicados \u00e0 causa das doen\u00e7as raras.<\/p>\n

Al\u00e9m da Deputada Federal eleita por S\u00e3o Paulo,\u00a0Rosangela Wolff Moro<\/a><\/strong><\/span>, uma das principais l\u00edderes da “FRENTE PARLAMENTAR DAS DOEN\u00c7AS RARAS”, tamb\u00e9m tivemos a participa\u00e7\u00e3o da Senadora Damares Alves e da Deputada Federal\u00a0Maria Rosas<\/a><\/span><\/strong>, que t\u00eam demonstrado um comprometimento exemplar e profundo frente a t\u00e3o importante quest\u00e3o de sa\u00fade p\u00fablica.<\/p>\n

Entre os destaques, foi uma honra ver o Dr.\u00a0David Zylbergeld Neto<\/a><\/span><\/strong>, CEO da Zalika Farmac\u00eautica, representando nossa empresa com tanto comprometimento, trazendo em seu discurso um ponto relevante ao F\u00f3rum: a coletividade judaica, que \u00e9 muito pr\u00f3xima a in\u00fameras doen\u00e7as raras gen\u00e9ticas como a doen\u00e7a de Tay-Sachs<\/em><\/a><\/span>, que pode ser prevenida por meio de testes gen\u00e9ticos, mas, principalmente e de forma simples, pela conscientiza\u00e7\u00e3o e orienta\u00e7\u00e3o dos jovens sobre essas condi\u00e7\u00f5es ao se casarem e procriarem.<\/p>\n

\"\"

Foto: Dr. David Zylbergeld Neto, CEO da Zalika Farmac\u00eautica
Cr\u00e9dito: Instituto Brasileiro de A\u00e7\u00e3o Respons\u00e1vel<\/p><\/div>\n

 <\/p>\n

Al\u00e9m das discuss\u00f5es pol\u00edticas, quest\u00f5es cruciais, incluindo o panorama atual das pol\u00edticas de doen\u00e7as raras, a import\u00e2ncia dos diagn\u00f3sticos precoces e o papel do setor produtivo na amplia\u00e7\u00e3o do acesso a terapias avan\u00e7adas.<\/p>\n

Em resumo, o XIV F\u00f3rum Nacional de Pol\u00edticas de Sa\u00fade sobre Doen\u00e7as Raras trouxe \u00e0 tona quest\u00f5es fundamentais sobre como enfrentar os desafios relacionados a doen\u00e7as raras no Brasil, mas tamb\u00e9m ressaltou a necessidade de colabora\u00e7\u00e3o entre legisladores, m\u00e9dicos, especialistas e organiza\u00e7\u00f5es da sociedade em geral para enfrentar os desafios que afetam milh\u00f5es de pessoas que vivem com doen\u00e7as raras.<\/p>\n

Vamos continuar a trabalhar juntos para superar esses desafios e ajudar a prevenir o sofrimento de futuras gera\u00e7\u00f5es.<\/p>\n

Juntos, podemos criar um futuro mais inclusivo e promissor para essas comunidades, fazendo a diferen\u00e7a no apoio \u00e0s pessoas afetadas por doen\u00e7as raras, pois, afinal de contas, \u201cSomos Todos Raros\u201d.<\/p>\n

 <\/p>\n

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 <\/p>","protected":false},"excerpt":{"rendered":"

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