Acontecimiento

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.