EpiCARE: a European Reference Network for rare and complex epilepsies
The European Reference Networks (ERNs) were launched in 2017. They involve more than 900 highly specialised health care teams, located in more than 300 hospitals in 26 European countries. The main mission of the ERNs is to help patients with rare or low-prevalence complex diseases.
A disease is defined as rare when it affects fewer than one in 2 000 people, is serious, chronic and often life-threatening. Between 5 000 and 8 000 of rare diseases affect daily life of around 30 million people in the EU.
The ERN EpiCARE brings together highly specialized health centres (38 full members and 12 affiliated partners) in 26 European countries with expertise in rare and complex epilepsies.
If you are a healthcare professional and would like to refer a patient to us, or if you are a patient yourself, or a family member of a patient, please get in touch via our contact page.
The objectives of the EpiCARE network
Accessibility
To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.
Developing treatment
To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.
Awareness
To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.
Education
To enhance educational activities and training opportunities across Europe by interchange across the network.
Collaborative research
To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
Agenda
It is our pleasure to invite you to register now for the 4th edition of the “In search of lost time” workshop, endorsed by the ERN EpiCARE.
The workshop will discuss in detail two important areas of epilepsy care:
· Neonatal seizures and epilepsies
· Epileptic Seizures in brain disorders
As in its previous editions the workshop will also include:
- a session under the leadership of patient advocates. It is indeed important for the clinicians to better understand to what extent the unpredictability of an active epilepsy is an additional major handicap to the underlying neurological disability due to aetiology
- A session reserved to next-generation experts during which young epileptologists can present their work in the fields of neonatal epilepsies or the one of epileptic seizures as a symptom in brain and other neurological disorder
- A session reserved to advanced therapeutic medical products and updates from Pharma
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
Dear colleagues,
It is our great pleasure to invite you to the 8th International Symposium on Paediatric
Movement Disorders which will take place in Barcelona 8-10 February 2024.
Please, Save the Date !
Our aim is to pursue the collaborative activities among professionals interested in paediatric movement disorders successfully started in the Symposium 2004.
As in the previous meetings we intend for the best qualified experts involved in paediatric movement disorders to take part in this Symposium.
We look forward to welcoming you in Barcelona, and hope that this meeting will be a memorable experience for all of you, where you will be able to share ideas, establish interesting contacts and strengthen scientific collaboration, in the enjoyable Mediterranean
atmosphere for which Barcelona is famous!
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
The EU Reference Network ITHACA announces the 2-day European workshop on the multifaceted care and research of genetic neurodevelopmental disorders (NDD). This meeting will be fully supported by the E uropean Union to enhance cross-border and multidisciplinary knowledge exchange and collaboration.
Attendance is free of charge. However, please register timely because the total number of participants it can host is limited to 250.
The steep increase in genetic diagnoses has implications for many clinical areas and directions of pre-clinical research. EuroNDD 2024 will therefore cover the following six themes:
- genes & pathways
- mechanisms of disease, model system & translational pre-clinical work
- applied & emerging therapies
- diagnostics
- polyhandicap – profound intellectual and multiple disabilities (PIMD)
- ethical, legal and psycho-social aspects
Aligned to the six themes, we will have plenary & parallel lectures, abstract presentations & poster pitch presentations. The parallel session will be followed by a selection of dedicated round tables.
All our registrants will get informed by the end of December about the roundtables they can select from.
The workshop program will stimulate a broad exchange between members of various disciplines such as geneticists, paediatricians, neurologists, psychiatrists and all other specialists involved in care and scientist in basic and translational research involving patients with neurodevelopmental disorders.
The call for abstract runs until November 30th. For more details, please check: Abstract Submission – ERN ITHACA (ern-ithaca.eu)
Registration runs from 15 November until 22 December 2023, please check: Registration and Travel – ERN ITHACA (ern-ithaca.eu)
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
The ZOOM link is always the same for all meetings and attached below for your information. Please feel free to share and invite your colleagues !
