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Etiquetas: 21 al 27 octubre 2006, AfectadosFamiliares, Anemia de fanconi, Calidad, Captar fondos, Centros de Referencia, Claudia Delgado González, Cuidadores, Enfermedad de pompe, Enfermedades raras, Epidemiología de las ER, Esclerosis Lateral Amiotrófica, Esperanza de vida, Fibrosis quística, Formar, Investigación, Joubert, Leucodistrofias, Madrid, millones de personas únicas, Miopatía de duchenne, Osteogénesis imperfecta, pacientes, Patologías mitocondriales, Plan de acción para las ER, Profesionales, Programa, Rosa Sánchez de Vega, salud, Sanidad, Semana, Servicio de Información y Orientación FEDER, Síndrome de apert, Sindrome de tourette, Test de cribado.
Etiquetas: 26 febrero 2008, 26/02/2008, Afecta a menos de 1 de cada 2.000 personas, Anemia de fanconi, Asistencia social, Asociaciones de Pacientes, Conocimiento médico, Déficit, Día Europeo de las Enfermedades Raras, Dolores crónicos, Enfermedad de pompe, Enfermedad de wilson, Enfermedades raras, Esclerodermia, Esclerosis Lateral Amiotrófica, EURORIS, Fármacos costosos, FEDER, Federación Española de Enfermedades Raras, Fibrosis quística, informe, Joubert, Leucodistrofia, Leucodistrofias, Madrid, Miopatía de duchenne, Nevus Gigante Congénito, Osteogénesis imperfecta, Paraparesia espástica familiar, Patologías mitocondriales, Rare Diseases Europe, salud, Sanidad, Síndrome de apert, Sindrome de tourette, Sistema Nacional de Salud, Situación de España con respecto a Europa, Situación socio-laboral, Vasculitis Sistémica, ¿Qué pasa en Europa?.
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