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Article published in elindependiente.com: “My daughter did not smile, something was wrong”

Article published in elindependiente.com: “My daughter did not smile, something was wrong” “Mencía no sonreía”, dice su madre, Isabel Lanvín. “Aunque era mi primer hijo, enseguida me di cuenta de que algo andaba mal”, reconoce. Tan solo tenía un mes de vida. Los bebés de su edad sonríen pero el gesto de su niña seguía […]

Article published in elindependiente.com: “My daughter did not smile, something was wrong” Read More »

“Cases like Nadia’s hurt science and those of us who fight for our children with rare diseases”

“Cases like Nadia’s hurt science and those of us who fight for our children with rare diseases” Isabel Lavín, madre de Mencía, una niña de 7 años aquejada de una extraña patología mitocondrial que la mantiene sin movilidad y sin habla, reaccionaba así a la polémica generada por el caso Nadia «Si se confirma el

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Article published in Agencia EFE Salud.com “Mencía’s ultra-rare disease, a unique smile in the world”

Article published in Agencia EFE Salud.com “Mencía’s ultra-rare disease, a unique smile in the world” Mencía tiene 7 años pero no puede hablar, ni moverse, ni sostenerse a causa de una enfermedad ultrarrara generada por un fallo en la producción de energía de sus células y que la convierte en la única niña viva en

Article published in Agencia EFE Salud.com “Mencía’s ultra-rare disease, a unique smile in the world” Read More »

Interview with Ramón Martí on Radio 5: “There is hope but it is by dint of insisting a lot, Isabel knows it very well”

Interview with Ramón Martí on Radio 5: “There is hope but it is by dint of insisting a lot, Isabel knows it very well” Sobre la invetigación acerca de las enfermedades raras Ramón Martí director del Instituto de investigación del Hospital Vall d’Hebrón dice: Hay esperanza pero es a fuerza de insistir mucho, Isabel lo

Interview with Ramón Martí on Radio 5: “There is hope but it is by dint of insisting a lot, Isabel knows it very well” Read More »

Interview published on deia.com: Isabel Lavín: “If she does a thousand hours of physio a day and continues to smile, who am I to throw in the towel?”

Interview published on deia.com: Isabel Lavín: “If she does a thousand hours of physio a day and continues to smile, who am I to throw in the towel?” BILBAO – Ejemplo de coraje y perseverancia, Isabel Lavín, madre de una niña con una enfermedad rara sin nombre ni tratamiento, ha participado esta semana en Bilbao

Interview published on deia.com: Isabel Lavín: “If she does a thousand hours of physio a day and continues to smile, who am I to throw in the towel?” Read More »

The Mencía Foundation was presented in Madrid with the celebration of a charity event

The Mencía Foundation was presented in Madrid with the celebration of a charity event Unas 250 personas se dieron cita en el acto de presentación en Madrid de la Fundación Mencía, entidad con la que colaboran diversos investigadores del CIBERER. En este evento, se recaudaron unos 30.000 euros que se destinarán a proyectos de investigación

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