The European Union Committee of Experts on Rare Diseases and EC Rare Disease Task Force have published the reports on the following subjects:
- State of the art of rare disease activities in Europe
- Centres of expertise
- European Reference Networks
- Registries
- Health indicators
- Rare diseases in International nomenclatures
- Orphan medicinal products
Annual reports on the state of the art of rare diseases activities in Europe
2012 Edition
This report covers activities up to the end of 2011.
- EUCERD Report: 2012 Report on the State of the Art of Rare Diseases Activities in Europe – Part I: Overview of Rare Disease Activities in Europe – July 2012
- EUCERD Report: 2012 Report on the State of the Art of Rare Diseases Activities in Europe – Part II: Key developments in the field of rare diseases in Europe in 2011 – July 2012
- EUCERD Report: 2012 Report on the State of the Art of Rare Diseases Activities in Europe – Part III: European Commission activities in the field of rare diseases - July 2012
- EUCERD Report: 2012 Report on the State of the Art of Rare Diseases Activities in Europe – Part IV: European Medicines Agency activities and other European activities in the field of rare diseases – July 2012
- EUCERD Report: 2012 Report on the State of the Art of Rare Diseases Activities in Europe – Part V: Activities of European Member States and other European countries in the field of rare diseases – July 2012
Individual reports on the activities in each of the European countries covered by this year’s report are also available via the country pages of the ‘National resources’ sub-tab.
2011 Edition
- EUCERD Report: 2011 Report on the State of the Art of Rare Diseases Activities in Europe – Part I: Overview of Rare Disease Activities in Europe and Key Developments in 2010 – July 2011
- EUCERD Report: 2011 Report on the State of the Art of Rare Diseases Activities in Europe – Part II: European Commission and other European Activities - July 2011
- EUCERD Report: 2011 Report on the State of the Art of Rare Diseases Activities in Europe – Part III: Activities in EU Member States and other European Countries - July 2011
2010 Edition
- EUCERD Report: 2009 Report on Initiatives and Incentives in the Field of Rare Diseases of the EUCERD - July 2010
Centres of expertise & European Reference Networks
- EUCERD Report: Preliminary analysis of the experiences and outcomes of pilot European Reference Networks for rare diseases – May 2011
- EUCERD Workshop Report: Centres of expertise for rare diseases and European collaboration between centres of expertise for rare diseases - March 2011
- EUCERD Workshop Report : Centres of Expertise/European Reference Networks for Rare Diseases – December 2010
- RDTF Report: European Reference Networks in the field of Rare Diseases: State of the art and Future Directions – July 2008
- RDTF Report: Centres of Reference for Rare Diseases in Europe – State-of-the-art in 2006 and Recommendations of the Rare Diseases Task Force – September 2006
- RDTF Report: Overview of Current Centres of Reference on rare diseases in the EU – September 2005
Registries and Health Indicators
- EUCERD/EMA Workshop Report: Towards a public-private partnership for registries in the field of rare diseases (4 October 2011) and Abstract
- EUCERD Report: Health indicators for rare diseases II – Conceptual framework for monitoring quality of care - September 2011
- RDTF Report: Health indicators for rare diseases I – Conceptual framework and development of indicators from existing sources - April 2010
- RDTF Report: Patient Registries for Rare Diseases – April 2009, Update June 2011
- RDTF Report: Health Indicators for Rare Diseases: State of the art and future directions – June 2008
Rare diseases in international nomenclatures
- EUCERD/Eurogentest Workshop Summary Report: Cross-referencing of terminologies - (27-28 September 2012)
Orphan medicinal products
- RDTF Report: How Many Drugs for How Many Patients? Recommendations of the Rare Diseases Task Force - July 2007
OrphaNews Europe
Further details concerning the areas of work of the EUCERD Joint Action can be found here.
