Prevalencia a nivel mundial/nacional/autonómico
Se desconoce con exactitud cuántas enfermedades raras existen, aunque se estima que el número asciende a más de 7.000 tipos distintos de ER según la OMS. Tampoco se sabe a cuantas afectan, pero se calcula que un 10% de la población tiene una.
- La mayoría de las enfermedades raras (en torno a un 80%) están producidas por una alteración del material genético
- Una de cada 17 personas puede tener una enfermedad rara. Solo en la UE, se estima que hay 30 millones de personas, lo que se traduce en torno a un 7% de la población total. Entre 13,5 y 25 millones son niños y adolescentes.
- Según FEDER, el 65% de estas afecciones son graves e invalidantes
- En España, unas tres millones de personas padecen una enfermedad rara, además más del 40% de estas personas no disponen del tratamiento adecuado.
Según el informe del Plan Integral de Enfermedades Raras de Castilla y León – PIERCyL 2023-2027:
A finales del año 2021, RERCyL contaba con un total de 319.956 casos registrados, correspondientes a 262.928 pacientes, de los cuales 196.353 estaban vivos, lo que supone un 74,7% del total de personas registradas. De ellos, el 54,0% (105.949) eran mujeres y el 46,0% (90.404) hombres. Asimismo, su distribución por tramos de edad refleja que el 27,1% de los casos se concentran en personas que tienen entre 75 y más años, seguido por el 21,4% correspondiente al tramo de edad de entre 60 a 74 años
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