This is the VASCERN SGA Proposal for 2017, under the ERN Framework Partnership Agreement (FPA) 2017-2021.
The ERN is coordinated by the ERN Network Coordinator, Pr. Guillaume JONDEAU - AP-HP, H�pital Bichat-Claude
Bernard, CRMR Marfan Diseases and related disorders (Centre de R�f�rence Maladies Rares Syndrome de Marfan et
apparent�s).
VASCERN aims to facilitate and improve diagnosis, treatment and care for ALL patients suffering from Rare
Multisystemic Vascular Diseases, thus enhancing access to care, and improving quantity and quality of life of these patients.
Networking, sharing and spreading our expertise, promoting best practices, guidelines and clinical outcomes, patient empowerment, improving knowledge through clinical and basic research are among our objectives.
The European Reference Network on Rare Multisystemic Vascular Diseases gathers European highly specialized
multidisciplinary Healthcare Providers (HCPs) in this thematic area of expertise. The Network includes 5 Rare
Diseases Working Groups: Heritable Thoracic Aortic Diseases (HTAD-WG), HHT-WG, Medium Sized Arteries (vascular Ehlers Danlos) (MSA-WG) ,Pediatric and Primary Lymphedemas (PPL-WG) and Vascular Anomalies (VASCA-WG). The specific Patient Group enables Patient representatives to work on common issues and to be involved in all activities. In addition, several Thematic Working Groups are established to better tackle transversal issues which are planned in the Multiannual Work Programme on: eHealth, Training & Education, Patient Registry, Ethics, and Communication / Dissemination.
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Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.
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Endo-ERN is directed at bringing together EU expertise on rare endocrine conditions. This is set-up in a 5-year plan including 3 phases. In Year 1 – the first phase - the consortium will focus on the inventory and mapping of the knowledge base, innovation and resource capacity and quality of care (QoC) of the Member States (MS) involved. Geographical differences will be charted on knowledge and awareness gaps, relevant biobanks, trials European patient advocacy groups (ePAGs) and other initiatives will be identified. In phase 2, comprising Year 2-4, a stepwise execution will follow to implement actions addressing gaps and opportunities that are identified in Year 1. To maintain and consolidate the equalisation of the healthcare and research level, the third phase – Year 5 – will focus on ensuring long term continuation (although this will be of continuous importance throughout phases 1 and 2.

The work plan is subdivided in 5 work packages (WPs) containing the phased activities aimed at 8 main thematic groups (MGTs). For the first time in the history of endocrinology, we are bringing together paediatric and adult endocrinologists, and both are also represented in the overall management structure of Endo-ERN. Tasks aimed at overall management and coordination of the execution of the work-plan activities in Year 1 are co-funded under the FPA, of which many are aimed at the initial inventory and surveying activities. Endo-ERN will setup a specific communication and dissemination strategy aimed at all stakeholders involved in the rare endocrine disease field to ensure awareness and engagement.

The combined activities in Year 1 will foster new collaborations, grow the network and start to align all EU wide activities to an equal high level.
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Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.
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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.
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Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.
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