• Because we constantly need to raise awareness on rare diseases among decisions makers, health professionals and the general public. Information is key to improving living conditions for rare disease patients; raising awareness is therefore one of our primary goals
• Because acting simultaneously in many places and in many countries can ensure the voice of rare disease patients is heard by more people
• Because rare diseases are a public health priority today in the European Union
• Because a day focussed on rare diseases can bring hope and information to people living with rare diseases, their carers and their families
• Because we want equity in access to care and treatment for rare disease patients in Europe and beyond
• Because we need an action that can bring all stakeholders of the rare disease community together with the same goal
• Because we need more funds for research and care, and more research and efforts directed towards rare diseases
• Because we need to keep fighting for rare disease patients…
• Because we need to coordinate policy actions at national level and at the international level

More specifically, this year we are seeking to achieve the following objectives:

• Promote research interest in the field of rare diseases
• Promote collaboration between patients and researchers
• To shape public policy and the research agenda
• To empower patients as actors in research
• To define research needs and priorities for rare diseases To find out more about this year's focus, click here..