Teresa Mas Bosch

Somos una asociación de afectados por la anemia de Blackfan Diamond, una anemia severa considerada enfermedad rara y grave, (casi 1000 casos en el mundo), los afectados se ven obligados a vivir necesitando transfusiones sanguíneas periódicas, en otros casos corticosteroides o transplante de médula ósea, buscamos apoyo para financiar proyectos de investigación en busca de nuevos tratamientos, que permitan a los pacientes llevar una vida corriente, sin sufrir efectos secundarios agresivos

Abril is a 7-year-old girl diagnosed with SPG52, with only 50 diagnoses in the world. SPG52 is an ultra-rare disease that causes very serious symptoms such as severe intellectual disability, epileptic seizures and very rapid muscle degradation in the lower body. Abril started walking when she was 3 years old and now at 7 she can hardly move anymore.

I'm Martin, they call me Tintin, I'm 2 years old. I was born with some malformations and one of them was a cleft lip, for which they operated on me when I was 3 months old. They had given my parents full assurance that it would be a simple operation, but something went wrong and I ended up in the Ucip with mechanical ventilation and deep sedation, and one day, they accidentally extubate me and I went into cardiorespiratory arrest for 15 min, and because of that accident I have cerebral palsy.