RDTF – Scientific support to the Rare Disease Task Force activities

The objective is to promote action on the prevention of rare diseases (RD) and to provide analysis and technical assistance in support of the development or implementation of a policy in the area of rare diseases and orphan drugs (OD). The objective is also to improve the traceability of RD in health information systems by assigning International Classification of Diseases codes (ICD10) to all rare diseases; proposing changes to improve the classification in view of future adoption of the ICD11, using the technical platform developed by WHO and with the assistance of an International expert group to be established; cross referencing with other classification systems as MedDRA and SNOMED-CT posting this information on the Orphanet website, in a format adapted to the needs of the information system community, to maximise its use.

A scientific support to the activities of the task force on rare diseases (RDTF) by identifying indicators, relevant for RD and already possible to document, and collecting them on a yearly basis; disseminating political and scientific information to all stakeholders through ad-hoc reports and an electronic newsletter, including information on national and EU initiatives and incentives; liaising between EU agencies and services and major stakeholders to maximise collaboration and input of outcomes; providing assistance to the task force on rare diseases on other scientific issues which may be identified in the course of this project.
The development or implementation of a policy in the area of rare diseases and orphan drugs (OD). Improved registration of Rare Diseases in ICD10 and ICD11.
Dit project wordt gesubsidieerd door
Europese Commissie DG SANCO
In dit project werken we samen met
INSERM- France