EURORDIS represents the voice of patients and in this capacity plays a central role in the policy making for rare diseases. The contribution of EURORDIS has been key to the adoption of important rare disease and orphan medicine legislations at the European level, including:
- the EU Regulation on Orphan Medicinal Products
- the EU Regulation on Paediatric Drugs
- the EU Regulation on Advanced Therapies
- the Commission Communication Rare Diseases: Europe’s Challenges
- the Council Recommendation on a European action in the field of rare diseases
- the EU Directive on Patients’ Rights in Cross-border Healthcare, and others.
By partnering with rare disease national alliances, EURORDIS also contributes to national processes, and facilitates the adoption and implementation of national plans and strategies for rare diseases in European countries. We:
ADVOCATE
to bring into place rare disease policy, based on the experiences and opinions of the rare disease community, collected through the EURORDIS Rare Barometer Programme and consultations with our members.
EMPOWER
patients advocates to engage in dialogue with policy makers by building their capacities through, for example, the EURORDIS Open Academy.
ENGAGE
patient advocates in the policy making process to ensure that policies that affect their everyday lives take into account their everyday needs, opinions and experiences.
Our end goal is to bring about impactful change for people living with a rare disease by ensuring national, European and international policies are created and developed taking into account the needs of our community – 30 million people living with a rare disease in Europe, 300 million people around the world, plus their families, carers and healthcare providers.
