Adequate definition, codification and inventorying of rare diseases
Cooperation between rare diseases organisations
- strengthens collaboration at European level among patient organisations
- develops partnerships among alliances
- increases the visibility and operational capacity of rare-disease organisations and networks
- help existing European rare-disease networks share information more easily
- promote better classification
- develop strategies and mechanisms for exchanging information between rare-disease victims, volunteers and professionals
- define relevant health indicators
- develop comparable epidemiological data at EU level
- support the exchange of best practise
- develop measures for patient groups
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