European Commission
Public Health

2012 Report on the State of the Art of Rare Diseases Activities in Europe - EUCERD Joint Action

Part I: Overview of rare disease activities in Europe

2012 Report on the State of the Art of Rare Diseases Activities in Europe - EUCERD Joint Action

Part II: Key developments in the field of rare diseases in Europe in 2011

2012 Report on the State of the Art of Rare Diseases Activities in Europe - EUCERD Joint Action

Part III: European Commission activities in the field of rare diseases

2012 Report on the State of the Art of Rare Diseases Activities in Europe - EUCERD Joint Action

Part IV: European Medicines Agency activities and other European activities in the field of rare diseases

2012 Report on the State of the Art of Rare Diseases Activities in Europe - EUCERD Joint Action

Part V: Activities of Member States and other European countries in the field of rare diseases

Orphanet Activity Report 2011

EUROCAT Statistical Monitoring Report 2009: European Surveillance of congenital anomalies

Orphanet Report Series: Prevalence of reported number of published cases listed by alphabetical order by disease

Orphanet Report on rare disease research, its determinants in Europe and the way forward

The European Conference on Rare Diseases 2010 - Report

Successful projects in the field of rare diseases

This brochure presents a range of such successful projects which bring real European added value to national efforts to tackle rare diseases.

EUCERD Report: Health indicators for rare diseases II - Conceptual framework for monitoring quality of care

2011 Report on the State of the Art of Rare Diseases Activities in Europe - European Union Committee of Experts on Rare Diseases

Part III: Activities in EU Member States and other European Countries

2011 Report on the State of the Art of Rare Diseases Activities in Europe - European Union Committee of Experts on Rare Diseases

Part I: Overview of Rare Disease Activities in Europe and Key Developments in 2010

2011 Report on the State of the Art of Rare Diseases Activities in Europe - European Union Committee of Experts on Rare Diseases

Part II: European Commission and other European Activities

Orphanet Report Series: List of orphan drugs in Europe

RDTF Report: Patient registries for rare diseases

Revision June 2011

EUCERD Report: Preliminary analysis of the experiences and outcomes of pilot European Reference Networks for rare diseases

2009 Report on Initiatives and Incentives in the field of rare diseases of the European Union Committee of Experts on Rare Diseases

European collaborative research projects & European clinical networks in the field of rare diseases

European collaborative research projects funded by DG Research and by E-Rare in the field of rare diseases & European clinical networks funded by DG Sanco and contributing to clinical research in the field of rare diseases

EUROPLAN - Recommendations for the Development of National Plans for Rare Diseases

EUROPLAN - Selecting Indicators to evaluate the Rare Diseases Initiatives

RDTF Report: Health indicators for rare diseases I - Conceptual framework and development of indicators from existing sources

The Voice of 12 000 patients

The European Conference on Rare Diseases 2007 - Report

The European Conference on Rare Diseases 2005 - report  Deutsch (de) français (fr)

Alzheimer Europe report on Rare Forms of Dementia

Activity Report of the European Network on the Epidemiology, Pathophysiology and Treatment of Severe Chronic Neutropenia

The scientific results of Orphanet, the database of rare diseases and orphan drugs for the general public

The final report of the European Network for Congenital Anaemias (ENERCA)