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Poster MOOC EJP RD

MOOC Diagnosing Rare Diseases

The first EJP RD MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” has started on 26 April. The course will be open for free for 7 weeks. 


More information here.

Free webinars on rare epilepsies

EpiCARE ERN has launched a series of educational webinars presented by our experts twice a month.

The webinars are free to join from anywhere in the world, although pre-registration is required.

 More information here

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 (28 full members and 15 affiliated partners) in 24 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.

Drawing o

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.

Latest News

Agenda

Jun
18
Fri
The European rare disorder ecosystem – Norway ready or not?
Jun 18 @ 10:00 am – 2:00 pm
The European rare disorder ecosystem - Norway ready or not?

A webinar about ERNs and Norway’s role on the international arena of rare disorders

In this webinar we are putting the spotlight on collaboration for rare disorders with a special focus on European Reference networks (ERN) and Norway’s role. Norway is already part of a few ERNs, but many more Norwegian health care providers are on their way into more networks. However, there are challenges ahead of us and we need to work together to solve them. One critical question is the accessibility of Clinical Patient Management System (CPMS) which currently is unavailable from Norwegian hospitals. In this webinar we will hear from participants with different experiences and perspectives on the ERNs. We hope you will join in and bring your questions to the speakers and to the panel at the end of the webinar. Hopefully we will be one step further towards contributing to well-functioning ERNs for the benefit of the rare disease population in Norway and Europe.

Register here

Sep
9
Thu
11th International Summer School for Neuropathology and Epilepsy Surgery – INES 2020 – postponed to 2021 @ University Hospital, Erlangen Krankenhausstr. 12
Sep 9 – Sep 12 all-day

Reliable neuropathological work-up of epilepsy-associated brain lesions represents an important diagnostic value for the surgical management of patients with drug-resistant focal epilepsy. The international classification of epilepsies recognizes a large spectrum of brain lesions as potential predictors of disease progression and treatment response.

The 11th International Summer School for Neuropathology and Epilepsy Surgery is designed to enable participants to better recognize and classify various histopathological substrates of drug-resistant epilepsy. Topics related to the diagnosis and treatment of human focal epilepsies will be presented by internationally renowned faculty. Advanced hands-on histopathology training will be offered in small groups led by distinguished tutors who will review and discuss microscopy slides of selected cases with different staining protocols. Participants will also have the opportunity to present their own cases for discussion with the entire group. The workshop has been held in Germany, Brazil, USA and China since 2013, with the endorsement of the International League Against Epilepsy (ILAE).

 

More details

Jul
18
Mon
18th San Servolo Advanced Epilepsy Course – postponed to 2022 @ San Servolo, Venice, Italy
Jul 18 – Jul 29 all-day

The main objective of the 7th edition of the Advanced Epilepsy Course Bridging Basic with Clinical Epileptology is to train attendees to improve the critical competencies necessary to design an effective research project/activity in the field of epilepsy.

More details