SCN8A European Foundation is born 2023 Feb 09th

Welcome To Europe's Second
SCN8A & SCN2A Conference & Family Gathering

Building a network across Europe and beyond.


The two genes SCN2A and SCN8A both encode for distinct neuronal sodium channels. Mutations of the genes SCN2A or SCN8A are associated with epilepsy, autism spectrum disorder, intellectual disability, movement disorders and sudden unexpected death in epilepsy patients (SUDEP).

As rare sodium-channel disorders they share commonality of research but they require distinct treatment and expertise, due to their divergent roles during brain development. Improved awareness and early diagnosis are crucial for the patients.

The first European SCN2A/SCN8A Conference (Germany, 2021) put the seed for the birth of several SCN2A & SCN8A patient advocacy organisations forming active networks and beginning to share knowledge and educational events.

The second European Conference will take place in Denmark focusing on common aspects of SCN2A/SCN8A but also highlighting their specificities: clinicians, researchers and patient advocates will have the possibility to enhance the intersection of data and expertise, enriching knowledge of optimum therapies and stimulating ideas for new research streams.

The event will pay particular attention to patient registries and Natural History Studies, but also to new areas of research to address the best precision medicine possible.


More at Epi Care

2

Second Edition

25

Topics

30

Speakers

Committees


Scientific committee

Elena Gardella, Walid Fazeli, Rikke S. Møller


Organizing committee

Stefania Dantone, Elena Gardella, Cinzia Scarcelli, Svenja Kaden, Francesca Furia, Laila Doktor


Event speakers

Meet our Passionate
event speakers


Elena Gardella

Elena Gardella

MEDICAL DOCTOR

Dept of Clinical Neurophysiology, Danish Epilepsy Centre Filadelfia

Walid Fazeli

Walid Fazeli

MEDICAL DOCTOR

Dept of Neuropediatrics and Epilepsy Centre, University Hospital Bonn

Rikke S. Møller

Rikke S. Møller

MEDICAL DOCTOR

Head of Department of Epilepsy Genetics, Danish Epilepsy Centre, Filadelfia

Adam Strzelczyk

Adam Strzelczyk

[...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...] [...]

Markus Wolff

Markus Wolff

MEDICAL DOCTOR

Center of Pediatric Neurology, Vivantes Hospital Neukölln, Berlin, Germany

Ángel Aledo-Serrano

Ángel Aledo-Serrano

MEDICAL DOCTOR

Director of the Vithas Madrid Neuroscience Institute

Madeleine Oudin

Madeleine Oudin

UNIVERSITY PROFESSOR

Tiampo Family Assistant Professor of Biomedical Engineering Tufts University

David Lewis-Smith

David Lewis-Smith

MEDICAL DOCTOR

Dept of Biomedical and Health Informatics, Children’s Hospital of Philadelphia

Roberto Previtali

Roberto Previtali

MEDICAL DOCTOR

Resident in child neurology and psychiatry, University of Milan, Italy

Dennis Lal

Dennis Lal

UNIVERSITY PROFESSOR

Dept of Molecular Medicine, Cleveland Clinic Lerner College of Medicine

Rima Nabbout

Rima Nabbout

UNIVERSITY PROFESSOR

Professor of Pediatric Neurology, Université de Paris

Steven Petrou

Steven Petrou

UNIVERSITY PROFESSOR

Head of Florey Dept of Neuroscience and Mental Health, University of Melbourne

Ilaria Rivolta

Ilaria Rivolta

UNIVERSITY PROFESSOR

Associate Professor at Milano-Bicocca University

M. Aluffi Valletti

M. Aluffi Valletti

MEDICAL DOCTOR

Medical Doctor attending Surgery School in Genova, Italy

Phil Zeitler

Phil Zeitler

MEDICAL DOCTOR

Medical Director, Children's Hospital Colorado Clinical

Angelica Pisati

Angelica Pisati

MEDICAL DOCTOR

Attending physician at Gaslini Hospital, Genova, Italy

Francesca Furia

Francesca Furia

MEDICAL DOCTOR

Medical Doctor, Phd Student at University of Southern Denmark

Katherine Howell

Katherine Howell

MEDICAL DOCTOR

Royal Children's Hospital, Melbourne, Australia

Sopio Gverdtsiteli

Sopio Gverdtsiteli

MEDICAL DOCTOR

MD, fellow at the Neuroscience Academy Denmark

Caterina Ancora

Caterina Ancora

MEDICAL DOCTOR

Child Neurology and Psychiatry, University of Padua, Italy

Andreas Brunklaus

Andreas Brunklaus

MEDICAL DOCTOR

Consultant Paediatric Neurologist at the Royal Hospital for Children, Glasgow

Gabrielle  Conecker

Gabrielle Conecker

PATIENT ADVOCATE

Co-Founder and Executive Director of the International SCN8A Alliance

Torie Robinson

Torie Robinson

PATIENT ADVOCATE

Founder & Editor for Epilepsy Sparks, Podcast Host for Epilepsy Sparks Insights

Gregori Cabanach

Gregori Cabanach

PATIENT ADVOCATE

President of SCN8A France association

Misia Kowanda

Misia Kowanda

PATIENT ADVOCATE

Research Outreach Manager, Simons Searchlight Foundation, NYC

Maaike Studemund

Maaike Studemund

PATIENT ADVOCATE

Co-founder and chairwoman of SCN2A Germany e.V.

Zhana Chokheli

Zhana Chokheli

PATIENT ADVOCATE

Founder of SCN2A Georgian Association

Stefania Dantone

Stefania Dantone

PATIENT ADVOCATE

Founder and Director, SCN2A Italia - Famiglie in Rete APS

Cinzia Scarcelli

Cinzia Scarcelli

PATIENT ADVOCATE

President, SCN8A European Federation

WHY PARTICIPATE

Is This Conference right For You?


Distinctiveness from other epilepsy events

This would be the only European event focused on SCN8A and SCN2A and as such is unique in its subject matter focus. This is important as SCN2A/8A require different research enquiries and specific awareness raising that will help support optimum diagnosis and correct treatment.

For Families

The aim of the Family Conference is to bring together families and patients with neurodevelopmental disorders associated with mutations in the two genes SCN2A or SCN8A with the leading experts, clinicians and researchers, in the field. Families can share experiences, feelings, hopes and fears.

For Clinicians and Researchers

The event helps to bring together expertise, evolve data strategies, connect cutting edge research and stimulate future research projects for these devastating disorders.


Event Schedule


Markus Wolff

9:15 AM - 9:45 AM

Monogenetic epilepsies: what’s new in 2023

Markus Wolff

Log in or Register to see the video of this speech!

Walid Fazeli

9:45 AM - 10:30 AM

SCN2A phenotypes and long term evolution

Walid Fazeli, Katherine Howell

Log in or Register to see the video of this speech!

Elena Gardella

11:00 AM - 11:45 AM

SCN8A phenotypes and long term evolution

Elena Gardella, Roberto Previtali

Log in or Register to see the video of this speech!

Andreas Brunklaus

11:45 AM - 12:15 PM

Gene variant effects across sodium channelopathies

Andreas Brunklaus

Log in or Register to see the video of this speech!

Dennis Lal

12:15 PM - 12:45 PM

SCN Portal

Dennis Lal

Rikke S. Møller

1:45 PM - 2:15 PM

SCN2A/SCN8A mixed functions: recent discoveries, underlying mechanisms, trends in therapy

Rikke S. Møller

Log in or Register to see the video of this speech!

Madeleine Oudin

2:15 PM - 2:45 PM

Therapeutic approaches for SCN2A/SCN8A DEEs

Madeleine Oudin

Log in or Register to see the video of this speech!

Steven Petrou

2:45 PM - 3:15 PM

SCN2A ASO Preclinical Data

Steven Petrou

Gabrielle  Conecker

3:15 PM - 3:45 PM

Developing the first global guidelines for the treatment of SCN8A: what we know and what we need to learn

Gabrielle Conecker

Log in or Register to see the video of this speech!

Rima Nabbout

4:15 PM - 4:35 PM

The SCN2A/SCN8A France experience

Rima Nabbout

David Lewis-Smith

4:35 PM - 4:50 PM

SCN8A/SCN2A HPOs

David Lewis-Smith

Log in or Register to see the video of this speech!

Sopio Gverdtsiteli

4:50 PM - 5:05 PM

Clinical similarities across sodium channelopathies

Sopio Gverdtsiteli

Log in or Register to see the video of this speech!

Ángel Aledo-Serrano

5:05 PM - 5:20 PM

Effect of Fenfluramine in SCN8A-DEE

Ángel Aledo-Serrano

Log in or Register to see the video of this speech!

Angelica Pisati

5:20 PM - 5:35 PM

LEV therapy in SCN8A-DEE

Angelica Pisati

Log in or Register to see the video of this speech!

Phil Zeitler

5:35 PM - 5:50 PM

Growth Attenuation Therapy: Pros and Cons

Phil Zeitler

Ilaria Rivolta

5:50 PM - 6:10 PM

How ketogenic diet may be beneficial in controlling neuronal excitability

Ilaria Rivolta

Log in or Register to see the video of this speech!

Select a session:

Adam Strzelczyk

9:30 AM - 10:00 AM

SCN2A and SCN8A cost-analysis and QoL studies

Adam Strzelczyk

Francesca Furia

10:30 AM - 10:45 AM

Sleep disorders in sodium channelopathies

Francesca Furia

Log in or Register to see the video of this speech!

M. Aluffi Valletti

10:45 AM - 11:00 AM

Movement disorders in SCN8A-DEE

M. Aluffi Valletti

Log in or Register to see the video of this speech!

Caterina Ancora

11:00 AM - 11:15 AM

Transition care in SCN8A

Caterina Ancora

Log in or Register to see the video of this speech!

Torie Robinson

11:15 AM - 11:40 AM

Bridging the gap between professionals, scientists and patients

Torie Robinson

Cinzia Scarcelli

11:40 AM - 12:00 PM

The unmet needs of rare families

Cinzia Scarcelli

Log in or Register to see the video of this speech!

Gregori Cabanach

1:00 PM - 1:15 PM

The SCN8A European Federation

Gregori Cabanach

Log in or Register to see the video of this speech!

Stefania Dantone

1:15 PM - 1:45 PM

The different experiences and future challenges of recently founded SCN2A associations in Italy, Germany and Georgia

Stefania Dantone, Maaike Studemund, Zhana Chokheli

Log in or Register to see the video of this speech!

Misia Kowanda

1:45 PM - 2:15 PM

SCN2A and SCN8A Simons Searchlight Registry

Misia Kowanda

Log in or Register to see the video of this speech!

What people said about past Conference


Our endorsements

This conference is endorsed by


Epicare

EpiCARE

Dansk Epilepsi Selskab

Dansk Epilepsi Selskab - Danish Epilepsy Society

Making This Exciting Conference Possible!

Meet the event sponsors


This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575.

Find out more at European Joint Programme on Rare Disease website.

European Joint Programme on Rare Disease

Platinum Sponsor

Neurocrine Biosciences

Gold Sponsors

Praxis
Jazz Pharmaceuticals
Registration and Venue Info

Join us and build a brighter future for our warriors!


Congress Registration

Registration is out of charge. To register please send an email to ffu@filadelfia.dk indicating the number of people, the dates of arrival and departure and if you need any type of support not provided by the hotel. Registrations are open until April 25th. Later registrations can be accepted depending on the structure’s availabilities.

How to reach the Congress Venue

The Comwell Køge Strand Hotel can be reached from Copenhagen’s airport:

  • By car: 39-minutes drive from Copenhagen airport trough E20 motorway (46,6 Km)
  • By train: 66-minutes trip from Copenaghen airport to Nørreport St. and from Nørreport St. to Køge St.

Hotel Reservation

All the participants / families should contact the hotel and make their reservations (the code for booking is FILADELFIA). They should indicate the dates for their staying and pay in advance. Rooms with special prices are available for the night of 25-26 May. The deadline for reservation is April 25th. On April 26th, the pre-reservation of the rooms not booked & paid will be canceled. From April 26th, the room booking will be available without a guarantee of availability. The cancellation of the pre-reservation of the rooms will be free of charge until 24 hours before the reservation date.

A limited number of family rooms is available and the hotel has no elevator to the rooms on the first floor. Families can arrange separately the booking of extra nights (standard price) and eventually other specific requests (special meals, additional beds, ...). Children not needing restoration can have a special quote only including accommodation.