Breaking the Access Deadlock to Leave No One Behind

A contribution by EURORDIS and its members on possibilities for patients' full and equitable access to rare disease therapies in Europe

EURORDIS Position Paper Breaking the Access Deadlock

This position paper is a contribution from EURORDIS and its members that offers a synthesis of their analysis, reflections and perspectives on the issue of access to rare disease therapies.

The position paper sets out a new four-pillar approach to tackling the challenges that prevent patients’ access to care and medicines, as well as the ambition to have 3 to 5 times more new rare disease therapies approved per year by 2025, 3 to 5 times cheaper than today.

In the paper, EURORDIS calls for a new model based on a collective conversation involving all stakeholders (patients, the pharmaceutical industry, national competent authorities, national health ministries, researchers, scientists and the European Medicines Agency).

 

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Page created: 29/05/2018
Page last updated: 29/05/2018
 
 
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