Proyectos

Nuestros proyectos más inmediatos son lograr:

  • Un protocolo educativo que les facilite su formación a estos chic@s, y que evite las largas reuniones de los padres con los docentes intentando explicarle las secuelas y limitaciones de la enfermedad. Y que porque un día se sienta bien el niñ@, no es porque tiene cuento y se está inventando nada, y que tampoco puede hacer como si no tuviera nada, pues después pagaría las consecuencias de ese exceso.
  • Un protocolo en sanidad que les allane el reconocimiento y el tratamiento de su enfermedad. No se puede tolerar que sean los propios padres quienes acaben explicando la enfermedad a los médicos, que se encuentran desinformados; o que les digan que no pueden hacer nada más por su hijo, que ellos no se ven capacitados para atenderlo, pero que tampoco saben a dónde enviarlo, preguntando a los padres que si ellos saben a dónde tienen que remitir el caso.
  • Que todas las asociaciones, enfermos y familiares unan sus fuerzas para lograr ser más eficaces en la consecución de sus objetivos.
  • Pero, sobre todo, que los investigadores dispongan de los recursos necesarios para avanzar en sus investigaciones.

 

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