Centres of Expertise and European Reference Networks for Rare Diseases

Centres of Expertise and European Reference Networks correspond to the needs expressed by rare disease patients. Patients ask for a better flow of scarce information and for better organisation of patient-centred care. This care must include social aspects as well as medical, and both need to be integrated at all levels. This care has to be improved for all patients throughout the EU, to address the concern for equity expressed by rare disease patients.

 

Establishing Centres of Expertise and European Reference Networks will play a key role for improving the lives of people living with a rare disease. On the topic of mobility, Eurordis believes that “expertise should travel rather than patients,” which includes mobility of health professionals as well as data and samples. But when the patient considers travel for health care purposes to be necessary, their mobility must be supported and facilitated.

 

This Contribution is one of four specific topics addressed in Eurordis’ response to the European Commission’s Public Consultation for the first Commission Communication on Rare Diseases.

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases