[16] The rare disease topics in the 2012 and 2013 FP7 Health Calls were: 'Support for international rare disease research; Clinical utility of –omics for better diagnosis of rare diseases; Databases, biobanks and clinical ‘bio-informatics’ hub for rare diseases; Preclinical and clinical development of orphan drugs; Observational trials in rare diseases; Best practice and knowledge sharing in clinical management of rare diseases (2012) and Development of imaging technologies for therapeutic interventions in rare diseases; New methodologies for clinical trials for small population groups (2013).

Maintain the EU’s coordinative role in the development of the EU policy on rare diseases and to support Member States in their activities on the national level. Continue to support the development of high quality National Rare Diseases Plans/Strategies in the European Union. Provide continued support for the International Rare Disease Research Consortium and initiatives developed under its umbrella. Continue to ensure proper codification of rare diseases. Work further to decrease inequalities between patients with rare diseases and patients suffering from more common disorders and to support initiatives promoting equal access to diagnosi ...[+++]s and treatment. Continue to promote patients empowerment in all aspects of rare diseases policy development Continue activities increasing public awareness about rare diseases and EU activity in this field Make use of the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare to bring together European Reference Networks on rare diseases. Support the development of the tools facilitating cooperation and interoperability of the European Reference Networks for rare diseases. Stimulate development and use of eHealth solutions in the area of rare diseases. Implement and continue support for the European Platform on rare diseases registration. Continue playing a global role in the rare diseases initiative and collaborating with important international stakeholders.

In order to improve the coordination and coherence of national, regional and local initiatives addressing rare diseases and cooperation between research centres, relevant national actions in the field of rare diseases could be integrated into plans or strategies for rare diseases.

The WHO has appointed the Chair of the EU Rare Diseases Task Force as the Chair of the Topic Advisory Group on Rare Diseases in order to contribute to this process of revision, providing proposals for codification and classification of rare diseases.

In 2012, the project RARECARENET (Information Network on Rare Cancers)[46], which built upon some of previous activities of the Project RARECARE (Surveillance of Rare Cancers in Europe)[47] which provided estimations for incidence, survival, prevalence and mortality for all rare cancers. The project aims (i) to provide updated indicators of rare cancer burden, (ii) to collect and disseminate information on the health care pathways for rare cancers, (iii) to identify the criteria for centres of expertise for rare cancers, (iv) to produce and disseminate information on diagnosis and management of rare cancers, (v) to develop a clinical dat ...[+++]abase on very rare cancers, (vi) to provide new knowledge on these diseases and their clinical management, and (vii) to develop and disseminate information for patients including a list of patients’ associations dedicated to rare cancers. In 2013, the European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment (ExPO-r-NeT), to support the provision of healthcare to children and young people with cancer in a Member State other than the Member State of affiliation, when the expertise with certain cancer conditions is rare and case volume low, contributing to provide cross-border best care to rare childhood cancer populations.

(11) rare diseases have been identified as a priority area for Community action within the framework for action in the field of public health; the Commission, in its communication concerning a programme of Community action on rare diseases within the framework for action in the field of public health has decided to give rare diseases priority within the public health framework; the European Parliament and the Council have adopted Decision No 1295/1999/EC of 29 April 1999 adopting a programme of Community action on rare diseases within the framework for action in the field of public health (1999 to 2003)(5), including actions to provide information, to deal ...[+++] with clusters of rare diseases in a population and to support relevant patient organisations; this Regulation implements one of the priorities laid down in this programme of action,