Frequently Asked Questions and Specific Criteria for the European Reference Networks for membership
Frequently Asked Questions 1. What is an ERN? A network connecting health care providers and centres of expertise of highly specialised healthcare, for the purpose of improving access to diagnosis, treatment and the provision of high-quality healthcare for patients with conditions requiring a particular concentration of resources or expertise no matter where they are in […]
EpiCARE ERN’s position regarding the new ERN application call
1. EpiCARE HCP membership / application criteria The European Commission will launch in the coming weeks the first call for new members to join existing 24 ERNs, following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU. The European Reference Network for rare and complex epilepsies ERN EpiCARE […]
EpiCARE film was awarded a Silver Dolphin Award at the 10th Cannes Corporate Media & TV Awards
We are delighted to announce that the European Commission’s EU Protects Campaign that features a short film about the collaborative work of EpiCARE was awarded a Silver Dolphin Award in Category A6: Integrated Communication: films and videos as part of a larger communication campaign at the 10th Cannes Corporate Media & TV Awards yesterday. Overall 950 […]
LAUNCH of the call for new members to join existing ERNs on the 30th September 2019
We are pleased to inform you that the call for new members to join existing ERNs is going to be open on the 30 of September 2019 until 30 of November 2019. You will find more information on the call and access to all relevant documents in the following website: https://ec.europa.eu/health/ern/consultations/2019_call_membership_en The application tool will […]
Report on the First 3 Years Cycle (2017-2019) of Epiped-Treatment Course
EPIPED COURSE on Treatment Strategies in Paediatric Epilepsies is an educational activity of the European Reference Network EpiCARE in partnership with the Paediatric Epilepsy Department of the University Hospitals of Lyon, France (HCL) and the Sant Joan de Déu, Barcelona, Spain, Research Foundation (FSJD). The report below highlights the findings of the first 3 years […]
1st International Symposium on Genetic Syndromes with Movement Disorders and Epilepsy
We have the pleasure to inform you that the 1st International Symposium on Genetic Syndromes with Movement Disorders and Epilepsy will be held in Barcelona, Spain on February 6-7, 2020. This first edition is organized in the continuity of the International Symposium on Child Movement Disorders, which gathered every other year more than 300 professionals from 30 different countries […]
How EpiCARE makes a difference for those with rare and complex epilepsies – ePAG Co-Chair shares her view with Genetic Alliance UK
Allison Watson, Co-Founder of Ring20 Research and Support UK CIO and Co-Chair of EpiCARE’s patient advisory group (ePAG) wrote on the benefits of European Reference Networks (ERNs) provide for rare disease patients across Europe. Her article was published on the Genetic Alliance UK’s blog. Genetic Alliance UK is national charity working to improve the lives […]
EpiCARE’s 2nd Annual Meeting
EpiCARE held its 2nd Annual Meeting on the 22nd-23rd February 2019 in London at the Holiday Inn Bloomsbury Hotel. On Friday 22nd February, we had a selection of expert group meetings running parallel for the following groups: – WP10 – Ketogenic diet expert group meeting – WP3 -Neuroimaging expert group meeting – WP4 – Neurophysiology […]
Aicardi Syndrome: from defining the phenotype to unravelling the genotype
The EpiCARE Fondazione Istituto Neurologico Nazionale Casimiro Mondino Centre, Pavia, Italy is at the origine of the creation of an experts group to exchange findings from ongoing research, and to set the basis for a collaborative effort aimed at unravelling the underlying aetiology of this rare and complex form of epilepsy. A closed Consensus Conference on diagnostic criteria, […]
EpiCARE features in the EUProtects campaign
As many as 8,000 rare diseases affect the lives of around 30 million people in the EU every day. Many of those affected by a rare or complex disease do not have access to diagnosis and high-quality treatment, since no country alone has the knowledge and capacity to treat all rare diseases and conditions. European […]
