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La Fundación Nacional de Hemofilia (NHF) es una organización sin fines de lucro que ha trabajado incansablemente para mejorar la vida de las personas con trastornos sanguíneos hereditarios durante más de 70 años. La misión de la fundación es encontrar mejores tratamientos y curas para estos trastornos, así como prevenir complicaciones a través de la educación, la promoción y la investigación.
La hemofilia es un trastorno genético raro que afecta la capacidad del cuerpo para coagular la sangre correctamente. Esto puede provocar sangrado excesivo y hematomas, que pueden poner en peligro la vida en casos graves. La NHF brinda apoyo y recursos para personas con hemofilia y sus familias, incluidos materiales educativos sobre cómo manejar el trastorno y conectarse con otras personas que están pasando por experiencias similares.
Uno de los principales objetivos de la NHF es financiar la investigación de nuevos tratamientos y posibles curas para la hemofilia. A través de asociaciones con instituciones médicas líderes en todo el mundo, la fundación ha podido lograr un progreso significativo en esta área. En los últimos años, ha habido varios avances en la terapia génica que ofrecen esperanza a las personas que viven con hemofilia.
Además de financiar la investigación, la NHF también aboga en nombre de las personas con hemofilia tanto a nivel estatal como federal. La fundación trabaja en estrecha colaboración con legisladores y formuladores de políticas para garantizar que las personas con hemofilia tengan acceso a una cobertura de atención médica asequible y otros recursos necesarios.
La educación es otra área de enfoque clave para la NHF. La fundación ofrece una amplia gama de materiales educativos en su sitio web, incluida información sobre cómo se diagnostica la hemofilia, consejos para controlar los síntomas en el hogar, consejos sobre cómo viajar de manera segura mientras se vive con hemofilia y mucho más. Además, la NHF organiza eventos regulares, como conferencias, donde las personas pueden aprender de expertos en su campo sobre nuevos desarrollos en opciones de tratamiento u otros temas relevantes.
En general, si usted o alguien que conoce ha sido diagnosticado con un trastorno de la sangre como la hemofilia o la enfermedad de von Willebrand (VWD), entonces definitivamente debería ver lo que está haciendo la Fundación Nacional de Hemofilia. ¡Están haciendo un trabajo increíble para encontrar mejores tratamientos y curas al mismo tiempo que brindan apoyo y recursos para que nadie se sienta solo durante este viaje!
hemophilia.org
