E-Health / Projects

3rd Health Programme (2014-2020)
Conferences organized under the Croatian Presidency in 2020: (1) Organs donation and transplantation and (2) a conference e-Health Week [HRPRES]
Croatian Ministry of Health is organising two important events during the Croatian presidency of the Council of the EU in 2020: High level conference on organ donation and transplantation and e-Health...
Croatian Ministry of Health is organising two important events during the Croatian presidency of the Council of the EU in 2020: High level conference on organ donation and transplantation and e-Health Week.
The aim of the high level conference on organ donation and transplantation conference is to engage EU health ministers and national policymakers to:
- provide political support and strong commitment to further developing and strengthening the implementation of successful organ donation and transplantation programmes,
- exchange experience and discuss best approaches aimed at increasing the availability of organs for transplantation
- identify new challenges and priorities for joint action in this area of public health and agree on directions and models for further development
E-Health Week plans to place particular emphasis on taking measures related to actionable health data and secondary use of data by creating the space for European policy making and enabling and implementing uniform European health data standards for interoperability, security, practices for data collection, sharing and ethical processing.


Start date: 01/01/2020 - End date: 31/07/2020

Call: Presidency conference grants 2019 under the AWP 2019 of 3HP
Topic: E-Health
3rd Health Programme (2014-2020)
A European Network for Rare and Complex Epilepsies [EpiCARE]
We propose a European Reference Network for the care of individuals with rare and complex epilepsy – EpiCARE. This will build on the successful pilot ERN E-pilepsy developed to raise awareness and a...
We propose a European Reference Network for the care of individuals with rare and complex epilepsy – EpiCARE. This will build on the successful pilot ERN E-pilepsy developed to raise awareness and availability of epilepsy surgery. The rare and complex epilepsies form a group of >137 diseases where epilepsy is the predominant feature with an impact on neurodevelopment, Quality of Life and mortality. Many more remain unrecognised. We have a network of 28 centres from 13 countries, all fulfilling the core criteria for expertise in this group of patients. EpiCARE will draw on this expertise to facilitate the diagnosis, care and management of individuals with rare and complex epilepsies across Europe. This will be through the delivery of care utilising e-health, developed by a series of workpackages (core networks) optimising diagnosis through access to specialised laboratory diagnostics, neuroimaging review, neurophysiology, neuropsychology, and neuropathology and optimising therapeutics by targeted therapies, surgery (through continuation of the E-pilepsy pilot ERN), and dietary intervention. The network will care for the epilepsies through all ages from birth to old age, with a specific group for neonatal seizures, and a coordinated work on transition between age groups. A series of sub networks will ensure the coordination and development of the network, with the utilisation of registries, and dissemination to stakeholders. Harmonisation of care will be promoted through the accessibility of the experts, availability of guidelines and facilitation of education and training. Data will be collated to enable design of clinical trials, with common outcome data elements, and to address research priorities. The EpiCARE network for rare and complex epilepsies will reduce the geographical inequalities and knowledge gap through utilisation of e-health and thus improve the outcomes of these patients substantially.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: E-Health
3rd Health Programme (2014-2020)
European Reference Network for Rare, Low Prevalence, Diagnosed and Undiagnosed Skin Disorders [ERN-SKIN]
The ERN-SKIN 2017 Work Programme aims at laying the groundwork for the key strategic objectives set forth in the 2017-2021 Work Plan. The objectives are:
• to build the operational framework and se...
The ERN-SKIN 2017 Work Programme aims at laying the groundwork for the key strategic objectives set forth in the 2017-2021 Work Plan. The objectives are:
• to build the operational framework and set up all the necessary functioning networking services, evaluated by a quality control strategy, with a special focus on:
--Patient Representatives Council to empower patients in the organization of cross-border healthcare pathways
--8 sub-thematic groups on high level patient management and research
--4 transversal groups: training & therapeutic education, e-health & registries, Deep phenotyping, clinical outcomes.
• to cover the largest possible number of diagnosed and undiagnosed rare and low prevalence skin disorders in order every patient finds a home in the ERN-SKIN with the inclusion of 4 new sub-thematic groups
• to integrate more members or affiliates, from Member States not yet represented in the ERN-SKIN with a particular attention for including small and Eastern European countries and involving in training activities Member Sates with insufficient number of patients or lacking technology or expertise
• to develop collaborative relationships with overlapping ERNs & Scientific Societies with the set up of common working groups to promote a multidisciplinary management
• to assess reliable resources for patients and healthcare providers thanks to survey on available services for patients and professionals, updated guidelines and best practices, validated therapeutic education programs, high-quality training sessions as well as efficient information and dissemination tools.
• to pool expertise and provide the first ERN-SKIN services: -- the first version ERN-SKIN directory ;
-- the first version ERN-SKIN website; --the first ERN-SKIN training; -- the development of the ERN-SKIN guidelines on ichthyosis; -- the definition of concrete road maps by each sub-thematic and transversal groups, a prerequisite to update/develop guidelines and build innovative e-health.
Start date: 01/03/2017 - End date: 28/02/2018

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2017
Topic: E-Health
3rd Health Programme (2014-2020)
EpiCARE – a European Reference Network for rare and complex epilepsies [ERN EpiCARE]
ERN EpiCARE is a network of 28 centres with expertise in the rare and complex epilepsies across 13 countries, developed to enhance diagnosis and ultimate management of these diseases. Since the launc...
ERN EpiCARE is a network of 28 centres with expertise in the rare and complex epilepsies across 13 countries, developed to enhance diagnosis and ultimate management of these diseases. Since the launch of the European Reference Networks in March 2017 we have built on the existing pilot ERN e-pilepsy in developing an expanded network with regard to the range of diseases included. We have achieved all objectives set out in our initial SGA for the first 12 months.
The activities over the second year will be targeted at consolidating and further developing the network. The proposed care pathway for referral will be established to ensure accessibility and coordination with national networks. Online tools to aid evaluation of patients will continue in development, with a move to utilising the Clinical Patient Management System to enable discussion of complex patients.
A registry will be established and collaboration with Orphanet will enable revision of clinical phenotype genotype information available for all on specific diseases. Pilot treatment protocols will be developed to be utilised across all centres, along with guidelines in collaboration with specialist societies. There will be a further focus on training and education.
Through collaborative working, sharing of expertise and access to advanced diagnostics we will build on the number of individuals with refractory epilepsy having an underlying diagnosis and further options for treatment.

Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: E-Health
3rd Health Programme (2014-2020)
Rare Neuromuscular Disease European Reference Network [ERN-EUR0NMD YR2]
EURO-NMD is a European Reference Network for the thematic grouping of rare neuromuscular diseases (NMDs), a broad
group of related disorders that represent a major cause of mortality and lifelong disa...
EURO-NMD is a European Reference Network for the thematic grouping of rare neuromuscular diseases (NMDs), a broad
group of related disorders that represent a major cause of mortality and lifelong disability in children and adults. NMDs are
caused by acquired or genetic defects of motorneurons, peripheral nerves, neuromuscular junctions or skeletal muscle,
resulting in muscle weakness and wasting, swallowing and breathing difficulties, and cardiac failure. NMDs are difficult to
recognize, and patients experience long delays in diagnosis. No curative treatments yet exist for any NMD and their rarity
and diversity pose specific challenges for healthcare and research, and for the development and marketing of therapies.
NMDs collectively affect an estimated 500,000 EU citizens and result in significant costs for families and the healthcare
system. EURO-NMD unites 61 of Europe’s leading NMD clinical and research centres in 14 Member States and includes
highly active patient organizations. More than 100,000 NMD patients are seen annually by the ERN. The network addresses
harmonizing and implementing standards for clinical and diagnostic best practice, improving equity of care provision across
Member States, decreasing time to diagnosis, increasing cost efficiency through better care pathways, access to specialist
training and education, application of eHealth services, development and application of care guidelines, facilitating
translational and clinical research, harmonising data and samples for research reuse, and sharing of high-quality data.
EURO-NMD partners will form the backbone for national implementation of best practice NMD care and will form trusted
partnerships with payers, national health systems and RD national plans. Ultimately, EURO-NMD will improve health
outcomes in NMD patients across Europe, provide new opportunities for translational research, and reduce the burden of
these chronic disabling conditions for families and healthcare systems in Europe.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
Topic: E-Health