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
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Second Edition25
Topics30
SpeakersCommittees
Scientific committee
Elena Gardella, Walid Fazeli, Rikke S. Møller
Organizing committee
Stefania Dantone, Elena Gardella, Cinzia Scarcelli, Svenja Kaden, Francesca Furia, Laila Doktor
Meet our Passionate
event speakers
Elena Gardella
MEDICAL DOCTORDept of Clinical Neurophysiology, Danish Epilepsy Centre Filadelfia
Walid Fazeli
MEDICAL DOCTORDept of Neuropediatrics and Epilepsy Centre, University Hospital Bonn
Rikke S. Møller
MEDICAL DOCTORHead of Department of Epilepsy Genetics, Danish Epilepsy Centre, Filadelfia
Adam Strzelczyk
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Markus Wolff
MEDICAL DOCTORCenter of Pediatric Neurology, Vivantes Hospital Neukölln, Berlin, Germany
Ángel Aledo-Serrano
MEDICAL DOCTORDirector of the Vithas Madrid Neuroscience Institute
Madeleine Oudin
UNIVERSITY PROFESSORTiampo Family Assistant Professor of Biomedical Engineering Tufts University
David Lewis-Smith
MEDICAL DOCTORDept of Biomedical and Health Informatics, Children’s Hospital of Philadelphia
Roberto Previtali
MEDICAL DOCTORResident in child neurology and psychiatry, University of Milan, Italy
Dennis Lal
UNIVERSITY PROFESSORDept of Molecular Medicine, Cleveland Clinic Lerner College of Medicine
Rima Nabbout
UNIVERSITY PROFESSORProfessor of Pediatric Neurology, Université de Paris
Steven Petrou
UNIVERSITY PROFESSORHead of Florey Dept of Neuroscience and Mental Health, University of Melbourne
Ilaria Rivolta
UNIVERSITY PROFESSORAssociate Professor at Milano-Bicocca University
M. Aluffi Valletti
MEDICAL DOCTORMedical Doctor attending Surgery School in Genova, Italy
Phil Zeitler
MEDICAL DOCTORMedical Director, Children's Hospital Colorado Clinical
Angelica Pisati
MEDICAL DOCTORAttending physician at Gaslini Hospital, Genova, Italy
Francesca Furia
MEDICAL DOCTORMedical Doctor, Phd Student at University of Southern Denmark
Katherine Howell
MEDICAL DOCTORRoyal Children's Hospital, Melbourne, Australia
Sopio Gverdtsiteli
MEDICAL DOCTORMD, fellow at the Neuroscience Academy Denmark
Caterina Ancora
MEDICAL DOCTORChild Neurology and Psychiatry, University of Padua, Italy
Andreas Brunklaus
MEDICAL DOCTORConsultant Paediatric Neurologist at the Royal Hospital for Children, Glasgow
Gabrielle Conecker
PATIENT ADVOCATECo-Founder and Executive Director of the International SCN8A Alliance
Torie Robinson
PATIENT ADVOCATEFounder & Editor for Epilepsy Sparks, Podcast Host for Epilepsy Sparks Insights
Gregori Cabanach
PATIENT ADVOCATEPresident of SCN8A France association
Misia Kowanda
PATIENT ADVOCATEResearch Outreach Manager, Simons Searchlight Foundation, NYC
Maaike Studemund
PATIENT ADVOCATECo-founder and chairwoman of SCN2A Germany e.V.
Zhana Chokheli
PATIENT ADVOCATEFounder of SCN2A Georgian Association
Stefania Dantone
PATIENT ADVOCATEFounder and Director, SCN2A Italia - Famiglie in Rete APS
Cinzia Scarcelli
PATIENT ADVOCATEPresident, SCN8A European Federation
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
Select a session:
9:15 AM - 9:45 AM
11:00 AM - 11:45 AM
11:45 AM - 12:15 PM
12:15 PM - 12:45 PM
SCN Portal
Dennis Lal
1:45 PM - 2:15 PM
2:15 PM - 2:45 PM
2:45 PM - 3:15 PM
SCN2A ASO Preclinical Data
Steven Petrou
4:15 PM - 4:35 PM
The SCN2A/SCN8A France experience
Rima Nabbout
4:35 PM - 4:50 PM
4:50 PM - 5:05 PM
5:05 PM - 5:20 PM
5:20 PM - 5:35 PM
5:35 PM - 5:50 PM
Growth Attenuation Therapy: Pros and Cons
Phil Zeitler
Select a session:
9:30 AM - 10:00 AM
SCN2A and SCN8A cost-analysis and QoL studies
Adam Strzelczyk
10:30 AM - 10:45 AM
10:45 AM - 11:00 AM
11:00 AM - 11:15 AM
11:15 AM - 11:40 AM
Bridging the gap between professionals, scientists and patients
Torie Robinson
1:00 PM - 1:15 PM
1:15 PM - 1:45 PM
What people said about past Conference
Devra T. Densmore Patient Advocacy Lead @ Praxis, USA
I couldn’t hold in the overwhelming pride I feel for everything you have accomplished. The SCN8A / SCN2A European Families Conference has been absolutely outstanding in every way. I was so engaged yesterday and learned so much. [...] I have been incredibly impressed by what has been shared.
Federica C. SCN8A mum, Italy
Esperienza incredibile... abbiamo conosciuto persone splendide. La ricerca va avanti e noi ringraziamo ogni giorno il lavoro di chi ci ha messo il cuore e l'anima.
Rikke S. Møller Danish Epilepsy Centre, Denmark
Fantastic talks at the first European #SCN2A and #SCN8A Conference and Family Gathering. Together we can make a difference. [...] I really admire the work of the amazing #SCN8A and #SCN2A advocacy groups - they are fighting so hard to improve lives for their love ones.
Iris Engelmann SCN8A mum, Germany
Es war sehr wertvoll, sich persönlich mit Leuten austauschen zu können, mit denen ich zum Teil schon Jahre per Mail Kontakt hatte.
Nicolas Lorente SCN2A dad, Germany
Die Stiftungen The Cute Syndrome Foundation und FamilieSCN2A Foundation und der Verein SCN2A Asia Pacific haben in den letzten Jahren gezeigt, wie wichtig Konferenzen mit Experten und Treffen mit Familien sind. Motivierte SCN2A- und SCN8A-Familien kamen 2020 zusammen, diskutierten die Möglichkeiten und fanden bei Ärzten wie Dr. Walid Fazeli und Dr. Elena Gardella die perfekte Unterstützung, um die Erfahrung aus den USA und Australien nach Europa zu bringen.
Marina SCN2A mum, Germany
Zwischen uns Eltern entstand sehr schnell das Gefühl eine Gemeinschaft zu sein, die sich gegenseitig helfen möchte.
Loredana and Flavio SCN8A parents, Italy
[...] Siamo entusiasti di avere conosciuto i maggior esponenti scientifici, i presidenti delle associazioni e fondazioni nonché i rappresentanti delle aziende farmaceutiche che lavorano sulla produzione di farmaci mirati a correggere la disfunzione responsabile della malattia. Il confronto con altri genitori è stato interessante. Abbiamo condiviso testimonianze, suggerimenti e aspettative.
Aurora SCN8A mum, Spain
Para mi, el Congreso de Bonn, ha supuesto una gran oportunidad de conocer a otros padres y un gran impulso para colaborar y trabajar con ellos para mejorar la vida de nuestros hijos
This conference is endorsed by
Epicare
Dansk Epilepsi Selskab
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.
Platinum Sponsor
Gold Sponsors
The Conference has been supported also by a grant from
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.