ERN support Ukraine

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

A common-ERN website has been created to compile information for people affected by rare diseases: www.erncare4UA.eu

EpiCARE also created a dedicated e-mail address for any questions regarding epilepsy: ukraine.epilepsies@epi-care.eu

Find more information and helpful resources: https://epi-care.eu/epicare-support-to-ukraine/

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

Universal

Accessibility

To improve accessibility of detailed diagnostics to individuals of all ages with rare and complex epilepsies across Europe, including clinical evaluation and investigation.

Heartbeat

Developing treatment

To develop treatment protocols and monitor standardised outcomes of rare and complex epilepsies.

Shapes

Awareness

To improve awareness and accessibility to protocols for physicians and individuals with rare and complex epilepsies across Europe for treatment.

Book

Education

To enhance educational activities and training opportunities across Europe by interchange across the network.

Rocket

Collaborative research

To enhance opportunities for registries, and collaborative research for the benefit of individuals with rare and complex epilepsies across Europe.

Agenda

Oct
6
Thu
International Congress Clinical frontiers in pediatric neurology
Oct 6 – Oct 7 all-day

Clinical Frontiers in Pediatric Neurology is an international congress focusing on the state of the art pediatric neurology. This regional congress, which is taking place in Ljubljana, Slovenia from October 6 – 7, 2022, is hosting distinguished international speakers and will be enabling successful researchers and clinicians from the region to present their work and to extend their networks.

It is intended for seasoned pediatric neurologists and pediatricians, as well as residents in pediatric neurology, inters and students with special interests in the field. You will have the opportunity to make new friends, discuss the old and new problems and get new ideas and new collaborations.

Check out the programme here: http://frontiers.pedkl.si/2022-2/scientific-programme-2022/)

Oct
13
Thu
Monthly EpiCARE post-surgical case discussion
Oct 13 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Oct
19
Wed
Conference on Alternating Hemiplegia of Childhood and ATP1A3 diseases @ Conference Centre, The Royal College of Physicians of Edinburgh
Oct 19 – Oct 21 all-day
Conference on Alternating Hemiplegia of Childhood and ATP1A3 diseases @ Conference Centre, The Royal College of Physicians of Edinburgh | Scotland | United Kingdom

‘DEFINING THE FUTURE FOR AHC & ATP1A3 DISEASES’

————————

A 3 DAY UNIQUE EVENT INCORPORATING:

• 10-year anniversary conference commemorating the discovery of the ATP1A3 gene in AHC and ATP1A3 diseases

• The 10th Symposium on ATP1A3 in disease

This 3 Day unique event will be focused on those most impacted by research outcomes; with an opportunity to learn from their experiences and their priorities for future research to improve the research landscape and clinical care.

It will also include an overview of the last 10 years since the gene discovery, alongside current and future research plans for AHC and ATP1A3 Diseases.

See the programme of the event.

—————————–

Where? – Hybrid event – EDINBURGH and ONLINE

Face-toFace VENUE:

Conference Centre, The Royal College of Physicians of Edinburgh,

9 Queens Street, Edinburgh, EH2 1JQ

 

When? – 19th-21st October 2022

The conference will run from Wednesday-Friday, with an evening formal dinner for delegates and speakers on Thursday 20th October (Great Hall, The Royal College of Physicians of Edinburgh)

——————–

BRINGING TOGETHER PEOPLE WITH LIVED EXPERIENCE OF

AHC AND ATP1A3 DISEASES, RESEARCHERS AND CLINICIANS

——————-

To submit an oral or poster presentation, please email: support@ahcuk.org by 31st August 2022. All submissions must use accessible language and style. Prizes for best oral and poster presentation.

——————–

The co-applicants and organising committee of the 10-year conference and 10th Symposium on ATP1A3 in disease are grateful for the generous grant from the European Joint Programme on Rare Diseases to support this event.

Oct
29
Sat
4th ILAE British Branch Epilepsy Neuroimaging Course @ Chalfont Centre for Epilepsy
Oct 29 – Oct 31 all-day

The ILAE British Branch Epilepsy Neuroimaging Course was successfully launched in March 2017. Medical imaging is integral to the diagnosis, monitoring and treatment of modern epilepsy care and has greatly increased our understanding of this complex neurological condition. A fundamental understanding of the latest imaging modalities and analytical techniques is essential to ensure clinicians are best placed to choose the correct types of scans, counteract for patient-specific anomalies, and better interpret the analytical outcomes, be it for adults or children with epilepsy. The forthcoming 4th course will bridge the gap between pre-clinical and clinical neuroimaging, by extending the successful format of hands-on and small group tutorials to include the topics of pre-clinical MRI and fMRI.

Open to all healthcare professionals and affiliates and MSc/PhD students, the 3-day course aims to provide both an overview and a solid foundation in state-of-the-art MRI and PET scanning in epilepsy.

THE COURSE WILL:

  • Consist of lectures and small-group tutorials given by experienced MRI- and PET-clinicians / researchers
  • Cover aspects of structural and functional MRI acquisition and analysis for both clinician and scientists
  • Train participants on real patients’ data in hands-on laboratory exercises.

ON COMPLETION OF THE COURSE, THE PARTICIPANTS WILL BE ABLE TO:

  • Employ MRI and PET to influence the clinical management of patients with epilepsy
  • Select appropriate MRI sequences, and distinguish clinical and MR features of different etiologies
  • Understand the role of advanced MRI and PET-MR acquisition and post-processing analysis methods, relevant for both clinical and pre-clinical neuroimaging.

https://epi-care.eu/wp-content/uploads/2022/10/Flyer_ILAE_Epilepsy_neuroimaging_course_2022.pdf

Nov
10
Thu
Monthly EpiCARE post-surgical case discussion
Nov 10 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Nov
14
Mon
All ePAG meeting 2022
Nov 14 – Nov 17 all-day
All ePAG meeting 2022

What is the theme of this year’s All-ePAG meeting?

The theme for this year is “How to get better at listening to your community to represent their needs and perspectives”.

Throughout the week we will reflect on why listening to your community matters, how to best capture my community’s voice and where to start and celebrate together some excellent examples from different perspectives.

This year’s theme was inspired by a guide co-developed by EURORDIS and the ePAG community:  Speak Up. Listen Up. Follow-Up guide: A brief guide for rare disease patient organisations on how to listen to the community.

For more information on this event, check out the programme here.

Dec
8
Thu
Monthly EpiCARE post-surgical case discussion
Dec 8 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Jan
12
Thu
Monthly EpiCARE post-surgical case discussion
Jan 12 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Feb
9
Thu
Monthly EpiCARE post-surgical case discussion
Feb 9 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

Mar
9
Thu
Monthly EpiCARE post-surgical case discussion
Mar 9 @ 1:00 pm – 2:00 pm
Organized by Prof. Ingmar Blümcke from the University Hospital of Erlangen, Germany, the monthly EpiCARE post-surgical case discussion is still going!

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 !

 

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