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Rare Diseases Task Force
The Rare Diseases Task Force was established in January 2004 via Commission Decision 2004/192/EC of 25 February 2004 on the programme of Community action in the field of public health (2003 to 2008). The RDTF was replaced by the European Union Committee of Experts on Rare Diseases.
The members of the RDTF included current and former rare disease research project leaders, elected experts from Member States , and representatives from relevant international organisations (DG Research, DG Enterprise, EuroStat, EMEA, WHO, OECD). Orphanet director Ségolène Aymé was the chair person.
Over 6 years, the RDTF played a pivotal role instigating key collaborative rare diseases initiatives in Europe. The RDTF met 12 times over the course of its mandate, and many key topics were brought forward for discussion in relation to rare disease research, policy and actions. The scientific activity of the RDTF was funded from 2005 onwards, which allowed the publication of OrphaNews Europe, the official newsletter of the Rare Diseases Task Force. Published every two weeks, this newsletter has served as a vital communication tool, bringing news on policy developments, medical and scientific findings, orphan drugs, research projects, patient activities, events and new relevant publications to the global rare disease community – including patients, healthcare professionals, researchers, industry professionals and health policy makers.
Various working groups were identified and constituted to meet the specific objectives of the RDTF: this included the Standards of Care working group, the Public Health Indicators working group, and the Coding, Classification and Data Confidentiality Group. These working groups produced various reports, recommendations and scoping papers, all available on the archived site of the former RDTF.
One of the most notable contributions of the RDTF was its pivotal role between June and October 2007 in drafting the Communication Rare Diseases: Europe’s Challenges, in close collaboration with the European Commission. The process utimately culminated in the adoption of the European Council Recommendation on an Action in the Field of Rare Diseases in June 2009.
You can consult the website of the former RDTF and RDTF archives (meetings, working groups, reports) here or in the section below.
RDTF Reports
The various working groups of the former RDTF have published the following reports:
RDTF Report: Overview of Current Centres of Reference on rare diseases in the EU - September 2005
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: Assessing the European Added-Value of European Reference Networks – March 2008
RDTF Report: How Many Drugs for How Many Patients? Recommendations of the Rare Diseases Task Force - July 2007
RDTF Report: Health Indicators for Rare Diseases: State of the art and future directions – June 2008
RDTF Meeting Reports
The Rare Diseases Task Force held two meetings per year at the European Commission in Luxembourg.
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
RDTF Working Groups
RDTF Working Group on Standards of Care: Documents
This working group worked on the concepts of Centres of Expertise (CE) and European Reference Networks (ERN) in the field of RD. Its work fed into a more general reflection on CE and ERN undertaken by the EC's High Level Group on Health Services and Medical Care. The group also considered discussions on genetic testing, genetic screening, and orphan drugs.
European Centres of Reference - 3 June 2005
Agenda
Meeting Report
Presentations
Overview of current Centres of Reference on rare diseases in the EU - 12 September 2005
Final Report
Annexes
Presentation to the High Level Group on Health Services and Medical Care
European Centres of Reference - 1 September 2006
Agenda
Report: Centres of Reference for Rare Diseases in Europe - State of the art in 2006 and recommendations of the RDTF
Presentations
Assessing treatable rare diseases and the proportion of patients eligible for treatment - 30 May 2007
Agenda
Report
Presentations
Assessing the European added-value of European Reference Networks - 11 March 2008
RDTF Report: European Reference Networks: State of the art and future directions - Third Report
Presentations
RDTF Working Group on Coding, Classification and Data Confidentiality: Documents
This working group collaborates closely with the WHO on its International Classification of Diseases and will contribute to the revision of the ICD-10 considering all existing classifications to ensure transparency.
State of the art in coding and classfication - 11 October 2006
Agenda
Minutes
Presentations
WHO ICD-10 Revision Process - 2 May 2007
Agenda
Minutes
Presentations
WHO ICD-10 Revision Process - 6 February 2008
Agenda
Minutes
Presentations
RDTF Working Group on Public Health Indicators: Documents
The Public health indicators (PHI) working group considers the selection of rare diseases with high priority for epidemiological surveillance. It will determine the definition of rare diseases which can be identified in mortality certificates and will work on a feasibility study for using mortality data as public heath indicators.
Defining a working plan - 30 January 2006
Agenda
Minutes
Health Indications in the field of RD - 12 March 2008
Report: Health indicators for rare diseases: State of the art and future directions
Presentation
Additional RDTF Workshops
Patient registries and databases - 13 March 2008
Presentation
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