María y su enfermedad rara /Maria and her rare disease episode artwork

EPISODE · Feb 29, 2024 · 9 MIN

María y su enfermedad rara /Maria and her rare disease

from Hablando Claro · host Clara Arnuncio

A few years ago, when I was in the park with my daughter, I met Maria and her mother. I'm remembering her today because it's International Day for Rare Diseases, and María was the first girl I met with Rett syndrome, a rare degenerative disease that affects movement and speech and affects mainly girls. I know it can be a sad subject, but I think it's important to make it visible and raise awareness. Today in the podcast I tell you Maria's story. I hope you like it and find it interesting. Before I say goodbye, I wanted to let you know that in a few weeks we will have an event of free Spanish classes for those who want to start learning Spanish. If you are interested or know someone who might be, register on our website to receive all the information! Hace unos años, cuando estaba con mi hija en el parque, conocí a María y a su madre. Hoy la recuerdo porque es el Día Internacional de las Enfermedades Raras, y María fue la primera niña que conocí con el síndrome de Rett, una enfermedad rara, degenerativa, que afecta principalmente el movimiento y el habla, y afecta principalmente a las niñas. Sé que puede ser un tema triste, sin embargo, creo que es importante visibilizarlo y crear conciencia al respecto. Hoy en el podcast te cuento la historia de María. Espero que te guste y te resulte interesante. Y antes de despedirme quería contarte que dentro de pocas semanas vamos a organizar un evento de clases gratuitas para aquellos que quieren comenzar a aprender español. Si te interesa o conoces a alguien que le pueda interesar, regístrate en nuestra web para recibir toda la información!

A few years ago, when I was in the park with my daughter, I met Maria and her mother. I'm remembering her today because it's International Day for Rare Diseases, and María was the first girl I met with Rett syndrome, a rare degenerative disease that affects movement and speech and affects mainly girls. I know it can be a sad subject, but I think it's important to make it visible and raise awareness. Today in the podcast I tell you Maria's story. I hope you like it and find it interesting. Before I say goodbye, I wanted to let you know that in a few weeks we will have an event of free Spanish classes for those who want to start learning Spanish. If you are interested or know someone who might be, register on our website to receive all the information! Hace unos años, cuando estaba con mi hija en el parque, conocí a María y a su madre. Hoy la recuerdo porque es el Día Internacional de las Enfermedades Raras, y María fue la primera niña que conocí con el síndrome de Rett, una enfermedad rara, degenerativa, que afecta principalmente el movimiento y el habla, y afecta principalmente a las niñas. Sé que puede ser un tema triste, sin embargo, creo que es importante visibilizarlo y crear conciencia al respecto. Hoy en el podcast te cuento la historia de María. Espero que te guste y te resulte interesante. Y antes de despedirme quería contarte que dentro de pocas semanas vamos a organizar un evento de clases gratuitas para aquellos que quieren comenzar a aprender español. Si te interesa o conoces a alguien que le pueda interesar, regístrate en nuestra web para recibir toda la información!

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María y su enfermedad rara /Maria and her rare disease

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This episode was published on February 29, 2024.

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A few years ago, when I was in the park with my daughter, I met Maria and her mother. I'm remembering her today because it's International Day for Rare Diseases, and María was the first girl I met with Rett syndrome, a rare degenerative disease...

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