Filter on [TOPICS=ERN Specific Grant Agreements Year 2]

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
3rd Health Programme (2014-2020)
European Reference Network on Rare Adult Cancers - Specific Grant Agreement for year 2 [EURACAN SGA2]
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are
over 300 rare cancer types which may affect all organs. A variety of histologi...
Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are
over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging
following the progresses of genomic classifications.
EURACAN is a patient centered ERN dedicated to the improvement of diagnosis, treatment management, knowledge,
research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN
will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care,
and patient communication. EURACAN gathers 67 centers from 18 EU countries. These centers were identified on the basis
of documented expertise, accrual in rare cancers, and endorsement by their member state.
EURACAN aims to open to additionnal centers, to expand to all EU countries and to host at least health care provider expert
for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific
societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies.
EURACAN will interact with other ERN with related topics, in particular benign conditions.
In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification:
sarcomas, rare gynecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine
tumors, rare head and neck, thoracic, skin, ocular and brain cancers.
EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling
an optimal care, access to rare resources, education, innovation and research to all EU patients.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018
3rd Health Programme (2014-2020)
European Reference Network For Rare Congenital Malformations and Rare Intellectual Disability [ERN-ITHACA]
Birth defects may result in death, chronic illness or long term disability with a significant impact on individuals, families,
health care systems and societies. Many birth defects are also associated...
Birth defects may result in death, chronic illness or long term disability with a significant impact on individuals, families,
health care systems and societies. Many birth defects are also associated with intellectual disability as part of rarer patterns
or syndromes and require multidisciplinary care. More than 8000 rare syndromes have been described. Thus although rare
these are collectively important conditions. They may have genetic, environmental and multifactorial causes but in 50% of
cases the cause is currently unknown. Identifying causes and studying the natural history of multiple anomaly syndromes
guides management or treatment, provides answers for families and healthcare professionals, furthers understanding of
normal development through research and may lead to prevention. All of these will have significant health economic benefits
and guide commissioning of future services. However, expertise in the study of these conditions is limited to a few experts,
in major healthcare centres. In some EU member states the specialty of syndrome diagnosis and management is not well
established, there is no specialist training and there are few clinical and laboratory resources.

We propose to continue the patient-centred European Reference Network for Rare Malformations and Intellectual Disability, ITHACA, which aims to meet the needs of patients, both diagnosed and undiagnosed. ITHACA works to improve access to diagnostic expertise by utilizing an innovative telehealth approach and guiding quality assured diagnostic testing.
Start date: 01/03/2018 - End date: 28/02/2019

Call: EUROPEAN REFERENCE NETWORKS SPECIFIC GRANT AGREEMENTS COVERING YEAR 2018