The rare disease community comes together in calling on the EU institutions and our national governments to stand by the European Reference Networks, and to uphold their commitment to enable long-lasting impact in people’s lives and, fundamentally, give all people living with a rare or complex condition in Europe the same opportunities to access
timely and adequate specialised healthcare.
Supporting research on rare and complex epilepsies in one of EpiCARE’s priorities.
To that effect, the Research Council is sharing some open funding calls opportunities on this webpage.
Do not hesitate to have a look at the calls, and contact Sébile Tchaicha, Research project manager, if you have any question !
The Genetic Research workgroup is sharing opportunities of collaborative calls for European series of patients carrying variants in already known genes, to facilitate this type of studies by connecting several centers across Europe involved in the study of genetic 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.
To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.
To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.
To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.
To enhance educational activities and training opportunities across Europe by interchange across the network.
To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.
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:
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 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:
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)