{"id":1900,"date":"2021-02-28T10:47:48","date_gmt":"2021-02-28T09:47:48","guid":{"rendered":"https:\/\/chiarifoundationbcn.com\/en\/?p=1900"},"modified":"2022-06-02T11:54:01","modified_gmt":"2022-06-02T10:54:01","slug":"share-to-raise-awareness","status":"publish","type":"post","link":"https:\/\/chiarifoundationbcn.com\/en\/share-to-raise-awareness\/","title":{"rendered":"SHARE TO RAISE AWARENESS"},"content":{"rendered":"

28 February 2021, Rare Disease Day<\/strong>
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In the context of the Rare Disease Day, at the Chiari & Scoliosis & Syringomyelia Foundation (CSSf) we would like to draw attention to the strong impact that living with a rare disease has on the different spheres of life of those who suffer from it and the great difference that having a support community can make.<\/p>\n

<\/p>\n

Having support<\/strong>, being able to share one\u2019s own experience<\/strong> is the first step in making each patient\u2019s history visible. The collective force of shared histories of struggle and overcoming adversities can open paths towards a future of hope, in which each patient is given the opportunity to talk, be heard and act.<\/p>\n

<\/p>\n

The deterioration of the quality of life is the main factor that leads a patient to investigate in search of answers, be it through a medical consultation, publications, or forums and patient associations. Having the right information<\/strong> available in a timely manner<\/strong> can make the difference between improvement and deterioration, thus avoiding making a wrong decision, with possible severe consequences for the patient\u2019s health.<\/p>\n

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Patients operated at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB)<\/i>, with a diagnosis of Filum Disease*<\/i> (including conditions that are currently considered to be rare, such as Arnold-Chiari Syndrome type I<\/strong> and Idiopathic Syringomyelia<\/strong>), refer to recurring elements in their testimonials: the appearance or worsening of symptoms that significantly limit their usual daily activities; a long journey from one medical consultation to another, searching for the correct diagnosis; the delay in the application of the adequate treatment.<\/p>\n

<\/p>\n

For all these reasons, the\u00a0Chiari & Scoliosis & Syringomyelia Foundation<\/i><\/span>,\u00a0together with the Institut Chiari & Siringomielia & Escoliosis de Barcelona<\/span> and the Filum Academy Barcelona<\/span>, promote research, teaching and dissemination regarding these conditions. Thanks to this, today there is a minimally invasive treatment for the Filum Disease and the related conditions, which allows avoiding severe complications (or even death).<\/p>\n

 <\/p>\n

Let\u2019s share experiences and spread knowledge.<\/p>\n

 <\/p>\n

Every challenge and every triumph can help save lives!<\/p>\n

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  1. (*) Royo-Salvador, M.B., Fiallos-Rivera, M.V., Salca, H.C. et al. The Filum disease and the Neuro-Cranio-vertebral syndrome: definition, clinical picture and imaging features. BMC Neurol 20, 175 (2020). https:\/\/doi.org\/10.1186\/s12883-020-01743-y<\/a><\/i>\n\t<\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"

    28 February 2021, Rare Disease Day In the context of the Rare Disease Day, at the Chiari & Scoliosis & Syringomyelia Foundation (CSSf) we would like to draw attention to the strong impact that living with a rare disease has on the different spheres of life of those who suffer from it and the great…  <\/p>\n

    Read more →<\/a><\/p>\n","protected":false},"author":1,"featured_media":1924,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[5],"tags":[],"yoast_head":"\nSHARE TO RAISE AWARENESS | CSSF<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/chiarifoundationbcn.com\/en\/share-to-raise-awareness\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"SHARE TO RAISE AWARENESS | CSSF\" \/>\n<meta property=\"og:description\" content=\"28 February 2021, Rare Disease Day In the context of the Rare Disease Day, at the Chiari & Scoliosis & Syringomyelia Foundation (CSSf) we would like to draw attention to the strong impact that living with a rare disease has on the different spheres of life of those who suffer from it 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