The Voice of Rare Disease
Patients in Europe
Rare Disease Policy
EURORDIS represents the voice of patients and in this capacity plays a central role in the regulatory process. 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.
An overview of the key pillars of EU Rare Disease policy.
European Reference Networks
Information on European Reference Networks & the European Patient Advocacy Groups
Parliamentary Advocates for Rare Diseases
A network of European and national members of parliament advocating to improve the lives of people living with a rare disease.
Social policy & integrated care
EURORDIS promotes the integration of rare diseases into social policies and also integrated care for rare disease patients and their carers.
The EURORDIS Access Campaign
The EURORDIS Access Campaign pushes for improved access to, and the development of rare disease medicines, diagnostic tests and medical devices.
EU Joint Actions on Rare Diseases and on Rare Cancers
Involving a broad range of stakeholders across Europe to shape policies, make recommendations aimed at ultimately improving the lives of patients.
The European Commission Expert Group on Rare Diseases
The group's mission is to support EU policy for rare diseases. It has adopted key recommendations on centres of expertise, ERN, patient registries and more.
EC Communication and Council Recommendation on Rare Diseases
The Commission Communication and Council Recommendation establish a strategy for meeting the challenge of rare diseases.
EURORDIS Joint Statement on Data Protection Regulation proposals
EURORDIS Joint Statement urges policymakers to ensure that the new EU Data Protection Regulation will enhance health research while protecting personal data.
Why rare disease research matters
Read EURORDIS' Position Paper on rare disease research.
EURORDIS and EPF call on payers to support access
Call on EU National Competent Authorities for Pricing & Reimbursement support
EU Rare Disease Policies: An Overview
More than half of Member State legislation stem from EU policies and strategies, including directives, regulations and recommendations.
EU Policy Framework
Key legislative texts, expert committees and funding bodies contribute to the EU rare disease policy framework.
Patients Access to Information
Key EU-level policies and initiatives foster patient and professional access to information on rare diseases.
Patients Access to Diagnosis & Care
EU level initiatives are improving access to rare disease diagnostics and care across Europe.
Patients Access to Treatment
EU level legislation and initiatives encourage the development of rare disease medicines and foster equitable access across Europe.
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