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Membership of the Rare Diseases Task Force
The RDTF currently has around 50 members comprising leaders of current or former European
research projects related to rare diseases, member state health experts, and representatives
of other relevant European programmes or organisations.
A list of current members can be found
here
The DG Sanco Joint Action Contract – 2008 22 91
This is a joint action to support the Rare Diseases Task Force scientific secretariat and contribute to the revision of the International Classification of Diseases in the field of Rare Diseases.
Download the contract (pdf)
OBJECTIVES
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 RD and orphan drugs (OD).
This includes:
- scientific support for the activities of the RDTF by identifying existing documentable indicators that are relevant to RD and collecting data 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 incentives;
- liaising between EU agencies and services and major stakeholders to enhance collaboration and maximise input and outcomes;
- providing assistance to the RDTF on other scientific issues that may be identified in the course of the project.
The objective is also to improve the traceability of RD in health information systems by:
- assigning International Classification of Diseases codes (ICD10) to all RD;
- proposing changes to improve the classification in view to the future adoption of the ICD11;
- using the technical platform developed by the WHO and with the assistance and an international expert group that will be established;
- cross-referencing with other classification systems such as MedDRA and SNOMED-CT
This information will be posted on the Orphanet website, in a format adapted to the needs of the information system community to maximise its use.
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