Aporte a la rutina de la trinchera asistencial donde los conocimientos se funden con las demandas de los pacientes, sus necesidades y las esperanzas de permanecer en la gracia de la SALUD.
sábado, 19 de diciembre de 2015
OUR INITIATIVE NEEDS YOUR HELP!
Sophia was diagnosed with Myrhe syndrome when she was only 4 years old. Her mother, Eileen, was told at the time that it was an extremely rare syndrome with only 32 cases in the world. Sophia was the first person to be diagnosed in the UK.
For Sophia, connecting with others living with a rare disease is crucial. There are still too many people affected by rare diseases, who have to cope alone, with no place to connect or talk about their concerns.
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