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EUCERD Activities
MEETINGS
The EUCERD holds three meetings per year at the European Commission in Luxembourg. In addition, members regularly take part in working groups and conference calls on specific topics.
EVENTS
An up-to-date list of European rare disease events is available on the EU Public Health portal:
Rare Diseases Events under the Public Health Programme
Forthcoming events
Past events
- EUCERD/WHO Technical Workshop on the Classification of Genetic Diseases - 1 December 2011, Luxembourg
- EUCERD/Eurobiomed Event (Rare2011 Conference European Day) - 4 November 2011, Montpellier, France
- EAHC Clustering and Communication Meeting on Rare Diseases - 25-26 October 2011, Luxembourg
- EUCERD/EMA Workshop: Towards a public-private partnership for registries in the field of RD - 4 October 2011, London
- EUCERD Workshop: EUCERD Recommendations on Quality Criteria for National Centres of Expertise in the field of Rare Diseases - 8 September 2011, Luxembourg
- EUCERD Workshop on centres of expertise for rare diseases and European collaboration between centres of expertise for rare diseases - Luxembourg, 21 (p.m.) & 22 (a.m.) March 2011
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EUCERD Workshop on Initiatives and Incentives in the Field of Centres of Expertise/European Reference Networks for Rare Diseases - Luxembourg, 8 December (p.m.) & 9th December (a.m.) 2010
- EUCERD Workshop on Health Indicators for Rare Diseases - Paris, France, 25 November 2010
- European Conference on Rare Diseases, Krakow, Poland, 13-15 May 2010
Working Groups
Ad hoc workshops are currently supported by the Joint Action to support the Scientific
Secretariat of the EUCERD (previously the RDTF), reflecting identified priorities in the field.
These three ad-hoc groups are the Working Group on Coding and
Classification of Rare Diseases, the Working Group
on Public Health Indicators for Rare Diseases and the Working
Group on Initiatives and Incentives in the field of Rare Diseases.
These working groups are composed of identified experts in the field
who are sollicited to discuss topics in the field and elaborate reports
for publication.
Working
Group
on Coding and Classification of Rare Diseases
This WG collaborates closely with the WHO on its International
Classification of Diseases and contributes to the revision of the
ICD-10, and elaboration of the ICD-11, considering all existing
classifications to improve the traceability of rare diseases in health
information systems. The production of the Alpha draft is ongoing.
Currently six chapters have already been produced and are available
for revision by the community of experts. Comments on these chapters
should be sent to
Bertrand Bellet.
Topic
Advisory Group for Rare Diseases – Revision of the WHO ICD
Chapters currently available for revision:
Version 1
ICD-11
Draft: Immunological diseases
ICD-11 Draft: Metabolic diseases
ICD-11 Draft: Nutritional diseases
ICD-11 Draft: Diseases of the nervous system
ICD-11 Draft: Developmental Abnormalities
Version 2
ICD-11 Draft: Haemotological diseases
ICD-11 Draft: Endocrine diseases
ICD-11 Draft: Metabolic diseases
ICD-11
Draft: Immunological diseases
Coding and Classification Workshop Reports:
Year 1 Coding and Classification Technical Workshop Report: 27 January 2010
Working
Group
on Public Health Indicators for Rare Diseases
Since 2006, this WG working group considers the selection of rare
diseases with high priority for epidemiological surveillance, with the
objective of defining indicators which are relevant, reliable, useful,
valid, applicable and feasible, in order to monitor trends in the field
of RD and assess the impact of policies.
RDTF
Workshop on Indicators 10th November 2009: Final Report April 2010
Working
Group
on Initiatives and Incentives in the field of Rare Diseases
Since 2009, this WG is implicated in the surveillance of initiatives
and incentives put in the field of rare diseases put in place at EU and
member state levels, in order to monitor progresses in the field and to
provide information to stakeholders in order to target action at their
level. The Scientific Secretariat is charged with data surveillance and
collection, the elaboration of annual draft reports and consequent
validation of data by experts before publication. The report for 2009
is produced in collaboration with the Europlan (European Project for
Rare Disease National Plans Development).
2009 Report on Initiatives and Incentives in the Field of Rare Diseases of the EUCERD
RDTF
Workshop on Initiatives and Incentives 9th November 2009: Summary Report
This working group has also concentrated on the initiatives taken at Member State level in the area of centres of expertise for rare diseases and in the area of European Reference Networks for rare diseases.
EUCERD Workshop Report: Centres of expertise and European Reference Networks for Rare Diseases(8-9/12/10)
EUCERD Workshop Report: National centres of expertise for rare diseases and networking between centres of expertise for rare diseases (21-22/03/2011)
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