EpiCARE News and Events

The EPNS, European Paediatric Neurology Societey and the ERN EpiCARE signed a Memorandum of Understanding, strengthening our collaboration and promoting ERN-EpiCARE and EPNS as active organisations for child neurology and rare and complex epilepsies in Europe.

Our goal is to improve availability and quality of educational and scientific endeavors and materials, e.g., guidelines and recommendations, attract and grow talent/intellects and create truly European paediatric neurologists and specialists in rare and complex epilepsies, whilst also promoting advocacy activities for high quality of patient management throughout Europe.

The 24 European Reference Networks are mobilizing to support Ukraine and particularly its rare disease community.

Our key actions :

• Creation of a common ERN website with contact information to reach each ERN: https://www.erncare4ua.com/
• Dedicated e-mail address: ukraine.epilepsies@epi-care.eu
• Ensuring to patients coming from Ukraine a fast access to rare diseases specialists / referrals when needed
• EpiCARE medical teams and the ILAE are in contact with pharmaceutical companies reg. medication shortage
• Each medical team has the necessary expertise to provide advice on treatment
• When required, EpiCARE offers to HCPs a conf. call with experts to discuss diagnostic and treatment alternatives
• EpiCARE has contacts to help translate essential medical documents into nearly all EU languages
• The Patient Advocates Group and EURORDIS can provide information on nearby patient associations willing to provide support to families and patients from Ukraine

You can find more information and support on the following websites:

• Common ERN Website : www.erncare4ua.eu 
• International League Against Epilepsy: https://www.ilae.org/ukraine-support
• International Bureau of Epilepsy: https://www.ibe-epilepsy.org/statement-on-ukraine/
• EURORDIS: https://www.eurordis.org/content/statement-eurordis-ukraine

And here are resources that can be useful:

• Letter from the Members of  the European Parliement: “Call to protect and support the Ukrainian people living with a rare disease”
• ILAE Communication: Crisis response in Ukraine: Securing medication and care for people with epilepsy through national and international efforts
• ILAE Seizure resource guide: available in english, ukrainian and russian

Torie Robinson, from the Epilepsy Sparks Insights podcast, did a podcast serie on the Ukraine situation, interviewing neurologists still in Ukraine, the Internation Bureau for Epilepsy’s CEO, an epileptologist from Poland who is getting drugs into Ukraine…

Watch all the Ukraine Special podcasts here and find out more about how we can all help and contribute.

The 2022 International 4EU+ Course on Pathogenesis of Epilepsy explores the neurobiology of epilepsy from basic and clinical perspectives.

The main objectives of this course are to deepen your knowledge on the pathophysiology of epilepsy and seizure, introduce you to modern research tools that are used in epilepsy research, and identify the current challenges and complex issues in epilepsy.

The course is particularly appealing for:

• Undergraduate and Ph.D. students from various research disciplines who are interested in epilepsy research
• Researchers from academia or industry seeking to upskill in the area of epilepsy research and epilepsy therapy development
• Clinicians seeking to appraise insights into the basic mechanisms of epilepsy

The application deadline is 15-12-2021 / The start date is 26-2-2022

Registration is free!

For more details and application information, visit https://4euepilepsy.lf2.cuni.cz/

Save the date ! The second edition of the “In search of Lost Time” will take place in Rome, on December 16-18th 2021.

This event is oganised as a brainstorming workshop to favour networking, debates and face-to-face
discussions. It will however be an hybrid event, meaning you can also attent virtually.

The programme of the 2 days is available here.

To register, and have more information on the event, visit the website www.rareepilepsyworkshops.net

We are looking forward to discussing and brainstorming together!

Contacts:
EpiCARE: Anne Robert
PTS Roma: Maura Stella

Solve-RD is a Horizon2020-funded project, dedicated to ‘solve the unsolved rare diseases’.

European Reference Networks (ERNs) are the European clinical expertise centers for rare diseases form the clinical core of Solve-RD by contributing their unsolved RD cohorts, diagnostic research expertise and infrastructure. Each ERN established their own Data Interpretation Task Force (DITF) within Solve-RD comprising expert clinicians and geneticists from the respective disease group.

ERN-EpiCARE has recently joined the project as an associated ERN and collaborates with regard to the re-analysis of unsolved exomes and genomes of patients with rare developmental and epileptic encephalopathy (DEE) or other rare epilepsy syndromes.

The Solve-RD approach to collect and jointly re-analyse large numbers of unsolved WES/WGS from RD patients already proved to be successful, increased the diagnostic yield and led to the discovery of new disease genes.

Link to Solve-RD website

Link to EJHG article series

SAVE THE DATES FOR IMPORTANT EpiCARE ACTIVITIES TO COME

• December 16th afternoon – 19th (midday), 2021: EpiCARE brainstorming face-to-face workshop in Rome, Italy  (a follow-up of the « In search of Lost time » virtual workshop held in 2020).
• February Thursday 17th & Friday18th, 2022: EpiCARE 2022 Annual General Assembly to be held in Lyon, France.

More information on both events will be provided in due time

It is our pleasure to share with all of you the report of a survey on Epilepsy and Pregnancy recently diffused by the International Bureau for Epilepsy

While the majority of women with epilepsy will have successful pregnancies, it is vital that women of childbearing age are fully informed on all issues relating to epilepsy and pregnancy.

Given that up to 50% of pregnancies are unplanned, it is important for women that they are aware of the risks involved. Getting the right message, to the correct audience, in the most appropriate format, is key.

Mindful of this, a working group of young women and medical professionals, created by IBE, is producing a multi-faceted toolkit to act as a guide for women of childbearing age. It will be developed to be user-friendly, culturally relevant and visually engaging. It will be available with print, web and social media in mind and with any medical information validated by the medical members of the project team.

As a first step in this major campaign, which is being piloted in Europe, a survey was carried across the continent in February with almost 900 women taking part. We are pleased to share with you the main report from the survey, which we believe is of critical importance and which highlights a number of issues of concern with regard to current knowledge and the timing in which this knowledge is obtained. The open comments provided by a number of respondents, from across the region, shows that women are still not receiving the information they need in a timely manner.

A summary report of the survey responses is also being produced and will be shared once available. We plan to have the summary available in a number of European languages, once the English version is published. The next step in the campaign is work on the toolkit itself.

You can read the full report here.

Thanks to a funding for the CEF Telecom programme, and a co-funding by the European Agency INEA, we are proud to present 5 e-learning modules developped in collaboration with the ILAE.

The goal of these modules is to help train clinicians to diagnosis of rare and complex epilepsies. Each case present a rare epilepsie, though an interactive path with quizzes and immediate feedback.

By the end of 2021, 5 more cases will be available.

You can try the modules here.

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

This webinar took place on June 18th 2021, 10am 2pm

In this webinar, the collaboration for rare disorders with a special focus on European Reference networks (ERN) and Norway’s role was the focus. 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.