The European Conference on Rare Diseases & Orphan Products is the unique platform/forum across all rare diseases, across all European countries, bringing together all stakeholders - academics, health care professionals, industry, policy makers, patients’ representatives.
It is an annual event, providing the state-of-the-art of the rare disease environment, monitoring and benchmarking initiatives.
It covers research, development of new treatments, health care, social care, information, public health and support at European, national and regional levels.
It is synergistic with national and regional conferences, enhancing efforts of all stakeholders. There is no competition with them, but efforts are complementary, fully respecting initiatives of all.
Key Topics
- To disseminate the most up-to-date health information related to the rare disease environment to all relevant stakeholders (patients and patients’ representatives, academics, health care professionals, industry and policy makers)
- To demonstrate the importance of EU actions in the field of rare diseases and review progress made to date
- To elaborate strategies and mechanisms for developing further exchange of information between stakeholders: people living with rare diseases, volunteers, health professionals, policy makers, researchers and industry at national and EU levels
- To exchange knowledge and best practices on all relevant health issues related to the rare disease environment
- To sustain efforts for rare disease policies at both the European and the national level
- To stimulate dialogue on policies for rare diseases in some of the Member States having recently joined the EU
- To present specific, achievable objectives at both European and national levels in order to reduce health inequalities for rare disease patient
Event Code 12106