Yann Le Cam, Chief Executive Officer, European Organisation for Rare Diseases – EURORDIS
We are breaking the isolation and despair of children and adults who are amongst the most vulnerable citizens in our society today. By bringing together all 6000 different rare diseases across Europe, we create a critical mass of 30 million people with rare diseases who can no longer be ignored; we are able to address the common issues faced by patients and their families; we call for public awareness and social justice; and we help shape a favourable environment leading to concrete, positive actions.
The 2008 Commission Communication Rare Diseases: Europe's Challenges, the 2009 Council Recommendation, and the 2011 Directive on Patient Rights to Cross-border Healthcare complement the 1999 EU Regulation on Orphan Medicinal Products, establishing a comprehensive and integrated EU strategy for rare disease research, diagnostics, treatment and care.
2014 is a turning point for the next decade. National rare disease plans/strategies will be consolidated and increasingly integrated into common European approaches, with European Reference Networks and European Research Infrastructures providing new opportunities to translate research into innovative treatments, and information technology into knowledge generation, leading to better care. The EU Programmes 'Horizon 2020' and Health Programme 2014-2020 are expected to support actions to achieve these objectives.
These goals can only be achieved through empowered patients partnering with all stakeholders and policy makers, reaching out to society at large … hence, Rare Disease Day!