Welcome To Europe's First
SCN8A & SCN2A Conference & Family Gathering
Building a network across Europe and beyond.
SCN8A and SCN2A related diseases are extremely rare, likely under diagnosed, neurodevelopmental disorders caused by variants to the SCN2A / SCN8A genes.
While sharing similarities with better known Dravet Syndrome (SCN1A), SCN8A/2A are different and can require different treatment.
Improved awareness and early diagnosis are key.
SCN2A & SCN8A also have differences, but as rare sodium-channel disorders there is commonality of research and expertise.
The SCN8A and SCN2A patient network is also growing with families forming groups in respective European nations, with groups connecting across Europe and beyond. This increasingly visible patient network offers helps researchers access and further aids the growth of the patient registries.
At this critical time, the conference brings together specialist clinicians, researchers and patient advocates. This intersection of data, expertise and research will enhance insight into genotype/phenotype relationships, enrich knowledge of optimum therapies, and stimulate ideas for new research streams.
The Department of Epileptology, University Hospital Bonn, is one of the 2 German centers that has been recognised as a European Reference Network (ERN) on rare and complex epilepsies. More at Epi Care
20
Total Topics20
Total Speakers2
Parallel Sessions50
Seats AvailableMeet our Passionate
event speakers
Steven Petrou
UNIVERSITY PROFESSORHead of Florey Dept of Neuroscience and Mental Health, University of Melbourne
Miriam Meisler
UNIVERSITY PROFESSORProfessor of Human Genetics and Professor of Neurology, University of Michigan
Alexandra Klotz
MEDICAL DOCTORDept of Neuropediatrics and pediatric epileptology, University Hospital Freiburg
Markus Wolff
MEDICAL DOCTORCenter of Pediatric Neurology, Vivantes Hospital Neukölln, Berlin, Germany
Rikke S. Møller
MEDICAL DOCTORHead of Department of Epilepsy Genetics, Danish Epilepsy Centre, Filadelfia
Walid Fazeli
MEDICAL DOCTORDept of Neuropediatrics and Epilepsy Centre, University Hospital Bonn
Elena Gardella
MEDICAL DOCTORDept of Clinical Neurophysiology, Danish Epilepsy Centre Filadelfia
Holger Lerche
MEDICAL DOCTORDept of Neurology and Epileptology, Hertie-Institute, University of Tübingen
Katrine Johannesen
MEDICAL DOCTORDept of Epilepsy Genetics and Personalized Treatment, The Danish Epilepsy Center
L.M. Aras Portilla
MEDICAL DOCTORApoyo Dravet director. Scientific director of Spanish Federation for Epilepsy
Nicola Specchio
MEDICAL DOCTORDepartment of Neuroscience, Bambino Gesù Children's Hospital
Jenny Burke
PATIENT ADVOCATEBoard of Directors, FamilieSCN2A Foundation, USA
Anna Homann
PATIENT ADVOCATEVolunteer for the SCN2A community in Germany and Europe
Svenja Kaden
PATIENT ADVOCATEVolunteer for the SCN2A community in Germany and Europe
Stefania Dantone
PATIENT ADVOCATEFounder and Director, SCN2A Italia - Famiglie in Rete APS
Kris Pierce
PATIENT ADVOCATECo-founder of Genetic Epilepsy Team Australia. Founder of SCN2A Australia
Roland Waegner
PATIENT ADVOCATEVolunteer at The Cute Syndrome Foundation
Ben Clay
PATIENT ADVOCATEFounder and Trustee of SCN8A UK & Ireland
Hillary Savoie
PATIENT ADVOCATEFounder and Director, The Cute Syndrome Foundation
Cinzia Scarcelli
PATIENT ADVOCATEFounder and Director, SCN8A Italia ODV
Is This Conference right For You?
Distinctiveness from other epilepsy events
This would be the first ever 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:
9:30 AM - 9:35 AM
Welcome to Bonn
Janbernd Kirschner
9:35 AM - 9:45 AM
9:45 AM - 10:30 AM
10:30 AM - 11:00 AM
4:30 PM - 5:00 PM
11:30 AM - 12:30 PM
2:00 PM - 2:30 PM
2:30 PM - 3:00 PM
3:30 PM - 4:00 PM
11:30 AM - 12:00 PM
12:00 PM - 12:30 PM
2:00 PM - 3:00 PM
3:30 PM - 4:00 PM
Select a session:
9:15 AM - 9:45 AM
9:45 AM - 10:15 AM
10:15 AM - 10:45 AM
11:00 AM - 11:30 AM
2:00 PM - 2:30 PM
11:30 AM - 12:30 PM
Meet the expert
Elena Gardella
11:30 AM - 12:30 PM
Meet the expert
Walid Fazeli
What people said about this 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
Meet all our "families"!
SCN8A Italia ODV
Rare Doesn't Mean Impossible!
A group of parents and families with children affected by the SCN8A gene mutation. We fight for SCN8A patients and their families to have a better world.
SCN2A Europe
SCN2A Europe would like to support the national communities and become an entry point for families, clinicians and researchers seeking information about autism/intellectual disability and epilepsy in general, or about SCN2A in particular.
SCN8A UK & Ireland
SCN8A UK & Ireland is a charity supporting families and research for SCN8A related disorders. SCN8A is a rare genetic disorder, causing neurological problems such as severe epilepsy, movement disorders and other medical challenges.
The Cute Syndrome Foundation
The Cute Syndrome is a 501(c)(3) public charity dedicated to funding research for and raising awareness of rare disorders like SCN8A Epilepsy and PCDH19 Epilepsy.
SCN2A Australia
We are dedicated to helping to develop treatments for SCN2A and developmental and epileptic encephalopathies (DEEs) and helping those working on and affected by DEEs better understand the conditions and live better lives.
FamilieSCN2A Foundation
We are an organization created by parents of children diagnosed with rare forms of Epilepsy and Autism as a result of a change in the SCN2A gene. Our mission is to improve the lives of those affected by SCN2A related disorders through research, public awareness, family support and patient advocacy.
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.
The University Hospital Bonn will host the Conference in presence in its spaces, providing for rooms and support.
Platinum Sponsors
The Conference has been supported also by a grant from: Zogenix International Ltd.
