ARCHIVE PAGE OF WWW.EUCERD.EU, WEBSITE OF THE
FORMER EUROPEAN EXPERT GROUPS ON RARE DISEASES & EUCERD JOINT ACTION
To date, three groups of stakeholders in the field of rare diseases have been successively brought together by the European Commission to provide expert advice in this area to their services: The Rare Diseases Task Force (2004-2009), The European Union Committee of Experts on Rare Diseases (2010-2013) and The EC Expert Group on Rare Diseases (2013-2016). From 2018 issues related to rare diseases are discussed at the European level by the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases, whilst questions related to European Reference Networks (ERNs) for Rare Diseases are dealt with by the Board of Member States of the ERNs.
This page is an archive of the EUCERD and ECEGRDs activities and information concerning the work of the EUCERD Joint Action (N° 2011 22 01, co-funded by the EU Health Programme).
The final meeting of the EUCERD Joint Action, presenting the outcomes and future perspectives was held on 15th September 2015 in Luxembourg and the Joint Action ended at the end of 2015. The deliverables and outcomes are available on this page.
The support to the elaboration of policies in the field of rare diseases and improvement of the codification of rare diseases provided by the EUCERD Joint Action continued in the scope of RD-Action, a Joint Action co-funded via the 3rd EU Health Programme for the years 2015-2018.
To date, three groups of stakeholders in the field of rare diseases have been brought together successively by the European Commission to provide expert advice in this area to their services: The Rare Diseases Task Force (2004-2009), The European Union Committee of Experts on Rare Diseases (2010-2013) and The EC Expert Group on Rare Diseases (2013-2016).
The Rare Diseases Task Force (2004-2009)
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, EMA, WHO, OECD). Orphanet director Sιgolθne Aymι 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.
One of the most notable contributions of the RDTF was its pivotal role between June and October 2007 in drafting the Communication Rare Diseases: Europes Challenges, in close collaboration with the European Commission. The process ultimately culminated in the adoption of the European Council Recommendation on an Action in the Field of Rare Diseases in June 2009.
The European Union Committee of Experts on Rare Diseases replaced the European Commissions Rare Diseases Task Force (RDTF) in 2010.
The European Union Committee of Experts on Rare Diseases (2010-2013)
The European Union Committee of Experts on Rare Diseases was formally established via the European Commission Decision of 30 November 2009 (2009/872/EC). This committee was charged with aiding the European Commission with the preparation and implementation of Community activities in the field of rare diseases, in cooperation and consultation with the specialised bodies in Member States, the relevant European authorities in the fields of research and public health action and other relevant stakeholders acting in the field.
The 51-member committee with representatives from all Member States and stakeholder groups was chaired by Sιgolθne Aymι and co-chaired by Kate Bushby, Yann Le Cam and Helena Kδδriδinen. The EUCERD met 3 times a year and organised a number of workshops supported by the EUCERD Joint Action.
Over the 3-year mandate of the EUCERD, 5 recommendations were adopted in the field of rare diseases concentrating on centres of expertise, European Reference Networks, the clinical added value of orphan medicinal products information flow, registries & data collection, and indicators for national plans. An Opinion on potential areas of collaboration at European level in the field of new born screening was also issued.
The EUCERD was a highly successful forum for exchange of experience and cooperation between stakeholders appreciated greatly by the rare disease community. The EUCERD was replaced at the end of its mandate by the European Commission Expert Group on Rare Diseases from 2014 onwards.
An editorial documenting the achievements of the EUCERD entitled The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community was published by the Orphanet Journal of Rare Diseases in February 2014 to mark Rare Disease Day.
The European Commission Expert Group on Rare Diseases (2014 onwards)
The European Commission Expert Group on Rare Diseases, established via Commission Decision 2013/C 219/04 of 30 July 2013, was active until 2016.
This group included representatives from all the Member States plus nominated experts, representatives of patient organisations, patients organisations in the field of rare diseases, European associations of producers of products or service providers relevant for patients affected by rare diseases, and European professional associations or scientific societies acting in the field of rare diseases.
After the Expert Group
From 2018 issues related to rare diseases are discussed at the European level by the Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases, whilst questions related to European Reference Networks (ERNs) for Rare Diseases are dealt with by the Board of Member States of the ERNs.
European Committee of Experts on Rare Diseases (EUCERD)
The EUCERD issued the following 5 recommendations on centres of expertise, European Reference Networks, registries, indicators for national plans and improving informed decisions based on the clinical added value of orphan medicinal products:
Recommendations of the EUCERD to the European Commission and Member States on Improving Informed Decisions Based on the Clinical Added Value of Orphan Medicinal Products (CAVOMP) Information Flow (September 2012)
· Translations: BG BulgarianCS CzechDA DanishDE GermanEL Greek, ES SpanishET EstonianFI FinnishFR FrenchHU HungarianIT ItalianLT LithuanianLV LatvianMT Maltese, NL DutchPL PolishPT PortugueseRO RomanianSK SlovakianSL SlovenianSV Swedish
EUCERD also issued the following Opinion.
EUCERD Opinion on Potential Areas of European Collaboration in the field of New Born Screening July 2013
EC Expert Group on Rare Diseases
The EUCERD issued the following recommendation:
The European Union Committee of Experts on Rare Diseases and EC Rare Disease Task Force, and the EUCERD Joint Action (N° 2011 22 01), the have published the reports on the following subjects:
arising from the EUCERD Joint Action N°2011 22 01
An article based on this work has been published: Charlotte Rodwell, Sιgolθne Aymι Rare disease policies to improve care for patients in Europe, Biochim Biophys Acta. 2015 Feb 25. pii: S0925-4439(15)00059-9. (Open Access)
2013 Edition arising from the EUCERD Joint Action N°2011 22 01
2012 Edition arising from the EUCERD Joint Action N°2011 22 01
arising from the EUCERD Joint Action N°2011 22 01
· RDTF Report: Patient Registries for Rare Diseases April 2009, Update June 2011
The public summary reports of previous EUCERD meetings can be accessed here:
The Rare Diseases Task Force held two meetings per year at the European Commission in Luxembourg from 2004 to 2009.
· Report on the 2nd Rare Diseases Task Force meeting 14/10/2004
· Report on the 4th Rare Diseases Task Force meeting 14/12/2005
· EUCERD Joint Action Workshop: Cross-Border Genetic Testing in the European Union 15-16 December 2014, Newcastle organised through the EUCERD Joint Action N°2011 22 01
· Workshop: The genetic testing offer in the EUEuropean workshop on the genetic testing offer in Europe, Ispra, 19-20 November 2012 organised by the EC Joint Research Centre
· EUCERD/Eurobiomed Event Rare2011 Conference European Day, 4 November 2011, Montpellier, France organised through the RDTF/EUCERD Scientific Secretariat Joint Action N° 2008 22 91 with Eurobiomed
· Workshop on monitoring and evaluation of health projects in the field of rare diseases 27 November 2014, Lisbon organised through the EUCERD Joint Action N°2011 22 01
The EUCERD Joint Action: Working for Rare Diseases (N° 2011 22 01) was co-funded by the European Commission (Executive Agency for Health and Consumers, now CHAFEA) in the context of the European Unions Second Programme of Community Action in the field of Health. It started on 1 March 2012 and ended in 2015, supporting the activities and mandate of the European Union Committee of Experts on Rare Diseases until the end of 2013 when the EUCERD ended its mandate. From 2014 it supported the activities of the European Commission Expert Group on Rare Diseases which replaced the EUCERD.
This Joint Action was led by Prof. Kate Bushby, former Vice-Chair of the EUCERD and member of the Expert Group.
The EUCERD was mandated to assist the EC in formulating and implementing the Communitys activities in the field of rare diseases, to foster exchanges of relevant experience, policies and practices between the Member States and stakeholders. Rare diseases are a priority area for action in the Public Health Programme (2008-2013). These activities have been defined in the Communication of the European Commission, entitled Rare Diseases: Europes challenge (11 November 2008) and the Council Recommendation on an action in the field of rare diseases (8 June 2009).
Specifically, this Joint Action addressed the following priority areas of the Council Recommendation:
To achieve its aims, the Joint Action built on the achievements of previous European initiatives in the field, such as the EC Rare Disease Task Force, Orphanet, the Europlan project, and the outputs of and the several rare disease networks that have received EU funding over the past years.
This Joint Action comprised five main areas of work:
This last area of work aimed, with the input of the EUCERD, to propose a model for sustainable action.
The expected outcome was integrated strategy for the implementation of rare disease policies through the exchange of experience between Member State health authorities already involved in rare disease policy definition and implementation and via a series of recommendations from the EUCERD and clear communication of these recommendations to national policy makers, patient organisations and learned societies.
Specific expected outcomes were the following:
The following outputs and public final deliverables of the EUCERD Joint Action (N°2011 22 01) are currently available. A meeting presenting the outcomes of the Joint Action was organised on 15 September 2015 in Luxembourg.