Reports Recommendations

EUCERD Recommendations

The EUCERD has issued the following recommendations:

EUCERD Recommendations on Centres of Expertise for Rare Diseases in Member States (24 October 2011)

RDTF/EUCERD Reports

The various ad hoc working groups of the RDTF and EUCERD have published the following reports:

2011 Report on the State of the Art of Rare Diseases Activities in Europe

This report covers activities up to the end of 2010

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

Other reports

EUCERD/EMA Workshop Report: Towards a public-private partnership for registries in the field of rare diseases (4 October 2011) and Abstract

EUCERD Report: Preliminary analysis of the experiences and outcomes of pilot European Reference Networks for rare diseases - May 2011

EUCERD Report: Health indicators for rare diseases II - Conceptual framework for monitoring quality of care - September 2011

EUCERD Report: 2009 Report on Initiatives and Incentives in the Field of Rare Diseases of the EUCERD - July 2010

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
RDTF Report: European Reference Networks in the field of Rare Diseases: State of the art and Future Directions – July 2008

RDTF Report: How Many Drugs for How Many Patients? Recommendations of the Rare Diseases Task Force - July 2007

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

Further details concerning the working groups and workshop reports of the RDTF can be found in the RDTF Archives section.

Further details concerning the working groups and workshop reports of the EUCERD can be found in the "Working Groups" section of the EUCERD activities section.

EUCERD Meeting Reports

The public summary reports of previous EUCERD meetings can be accessed here:
EUCERD Meeting Summary Report - 9-10/12/10
EUCERD Meeting Summary Report - 22-23/03/11
EUCERD Meeting Summary Report - 24-25/10/11 and EUCERD Meeting Abstract - 24-25/10/11

RDTF Meeting Reports

The Rare Diseases Task Force held two meetings per year at the European Commission in Luxembourg from 2004 to 2009.

Report on the 1st Rare Diseases Task Force meeting - 20/01/2004
Report on the 2nd Rare Diseases Task Force meeting - 14/10/2004
Report on the 3rd Rare Diseases Task Force meeting - 20/06/2005
Report on the 4th Rare Diseases Task Force meeting - 14/12/2005
Report on the 5th Rare Diseases Task Force meeting - 08/06/2006
Report on the 6th Rare Diseases Task Force meeting - 14/12/2006
Report on the 7th Rare Diseases Task Force meeting - 20/06/2007
Report on the 8th Rare Diseases Task Force meeting - 23/10/2007
Report on the 9th Rare Diseases Task Force meeting - 28/02/2008
Report on the 10th Rare Diseases Task Force meeting - 13/11/2008
Report on the 11th Rare Diseases Task Force meeting - 30/04/2009
Report on the 12th Rare Diseases Task Force meeting - 23/10/2009