Acontecimiento


Policy event

Since 2008, EURORDIS has organised an annual Policy Event in Brussels on the occasion of Rare Disease Day that raises awareness and moves forward key policies and initiatives benefiting people living a rare disease.

Since the very first Rare Disease Day took place on the last day of February in 2008, EURORDIS has organised a Policy Event in Brussels each year to draw attention to and move forward key issues. In 2008, EURORDIS co-hosted a Public Hearing on Rare Diseases at the European Parliament, focusing on rare diseases as a public health priority.

In 2009, a Dinner Debate on the theme Patient Care: A Public Affair was held. In 2010, a European Workshop considered Bridging Patients and Researchers to Build the Future Agenda for Rare Disease Research in Europe.

In 2011, EURORDIS organised the symposium Rare but Equal: Addressing Health Inequalities for Rare Disease Patients in Europe in partnership with the DG Health and Consumers. In 2012, the European Symposium Rare Diseases: A Model of EU Solidarity highlighted the achievements of European cooperation in the field of rare diseases and called for rare diseases to be a priority in EU public health and research policy initiatives. In 2013, a Policy Event focused on Faster Access to Medicines for Rare Disease Patients by looking at how policy measures – particularly the European Transparency Directive – can improve access to therapies by enhancing transparency around pricing and reimbursement decisions. Information about the annual Policy Event in Brussels on the occasion of Rare Disease Day can be found on the rarediseaseday.org website. 

 

Page created: 09/01/2014
Page last updated: 06/11/2014
 
 
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