The objective of this project is to establish the European Haemophilia Network (EUHANET) to harmonise and improve the care received by European citizens with inherited bleeding disorders. The European Health Professionals and Patient Organisations will work together to enhance the quality of the delivered care. Criteria will be developed for the definition of levels of care provided by haemophilia centres and these will be applied to centres throughout Europe. A new public Haemophilia Central website will provide all the information relevant to patients with inherited bleeding disorders and their carers. EUHANET will also support collaboration between the expanded and developed pharmacovigilance system, the European Haemophilia Safety Surveillance System (EUHASS), and the new prospective Rare Bleeding Disorders Database (RBDD).
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The objective of SHARE is to improve the quality of care of patients suffering from PRD (i.e. JIA, JDM, SLE, APS, vasculitis and scleroderma) by means of:
(I) Resolving the barriers between: (a) networks and projects, (b) PRD research teams, and (c) all actors involved in the itinerary from the conception of an idea or lead to the development of a new medical technology or drug and the treatment of patients;
(II) Improving a patients access to relevant data/information about his/her disease;
(III) Facilitating the exchange of ideas, results, data and best practices, and;
(IV) Facilitating the implementation of results in training programs of health care professionals.
Building on established networks (PReS/PRINTO), national registers and European projects, SHARE will have a considerable impact on the treatment and management of PRD by catalyzing progress in research, by harmonizing treatment, by improving the foothold of patients and by supporting regulatory and policy decisions.
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EPHE will build on the EPODE methodology (a capacity building approach) and on the outcomes from the EEN Book of Recommendations to create synergies within the EU research framework programme and to favor multiplier effects and sustainability.EPHE aims to analyse from 2012 to 2015: 1)the added value of the implementation of an adapted EPODE methodology for the reduction of socioeconomic inequalities in health-related diet and physical activity behaviours of families with children aged 6 to 12 living in 7 different European communities; as a priority where premature mortality exceeds 20% of the EU average and with different socioeconomic profiles. 2)opportunities to sustain the implementation of EPHE best practices in other EU regions and Member States (MS) via EU structural funds focusing on the replicability and transferability at a larger scale of those to leverage the experience to develop action plans by MS and to make use of structural funds for the promotion of health equity.
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