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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 Topics

20

Total Speakers

2

Parallel Sessions

11/50

Seats still Available
Event speakers

Meet our Passionate
event speakers


Steven Petrou

Steven Petrou

UNIVERSITY PROFESSOR

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

Miriam Meisler

Miriam Meisler

UNIVERSITY PROFESSOR

Professor of Human Genetics and Professor of Neurology, University of Michigan

Alexandra Klotz

Alexandra Klotz

MEDICAL DOCTOR

Dept of Neuropediatrics and pediatric epileptology, University Hospital Freiburg

Markus Wolff

Markus Wolff

MEDICAL DOCTOR

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

Rikke Steensbjerre M.

Rikke Steensbjerre M.

MEDICAL DOCTOR

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

Walid Fazeli

Walid Fazeli

MEDICAL DOCTOR

Dept of Neuropediatrics and Epilepsy Centre, University Hospital Bonn

Elena Gardella

Elena Gardella

MEDICAL DOCTOR

Dept of Clinical Neurophysiology, Danish Epilepsy Centre Filadelfia

Holger Lerche

Holger Lerche

MEDICAL DOCTOR

Dept of Neurology and Epileptology, Hertie-Institute, University of Tübingen

Katrine Johannesen

Katrine Johannesen

MEDICAL DOCTOR

Dept of Epilepsy Genetics and Personalized Treatment, The Danish Epilepsy Center

L.M. Aras Portilla

L.M. Aras Portilla

MEDICAL DOCTOR

Apoyo Dravet director. Scientific director of Spanish Federation for Epilepsy

Nicola Specchio

Nicola Specchio

MEDICAL DOCTOR

Department of Neuroscience, Bambino Gesù Children's Hospital

Anna Homann

Anna Homann

PATIENT ADVOCATE

Volunteer for the SCN2A community in Germany and Europe

Svenja Kaden

Svenja Kaden

PATIENT ADVOCATE

Volunteer for the SCN2A community in Germany and Europe

Stefania Dantone

Stefania Dantone

PATIENT ADVOCATE

Founder and Director, SCN2A Italia - Famiglie in Rete APS

Leah Schust Myers

Leah Schust Myers

PATIENT ADVOCATE

Founder and Executive Director, FamilieSCN2A Foundation

Kris Pierce

Kris Pierce

PATIENT ADVOCATE

Co-founder of Genetic Epilepsy Team Australia. Founder of SCN2A Australia

Roland Waegner

Roland Waegner

PATIENT ADVOCATE

Volunteer at The Cute Syndrome Foundation

Ben Clay

Ben Clay

PATIENT ADVOCATE

Founder and Trustee of SCN8A UK & Ireland

Hillary Savoie

Hillary Savoie

PATIENT ADVOCATE

Founder and Director, The Cute Syndrome Foundation

Cinzia Scarcelli

Cinzia Scarcelli

PATIENT ADVOCATE

Founder and Director, SCN8A Italia ODV

WHY PARTICIPATE

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:

Janbernd Kirschner

9:30 AM - 9:35 AM

Welcome to Bonn

Janbernd Kirschner

Walid Fazeli

9:35 AM - 9:45 AM

Introduction & Conference Welcome

Elena Gardella, Walid Fazeli, Anna Homann, Roland Waegner

Holger Lerche

9:45 AM - 10:30 AM

Introduction genetic epilepsies and basic mechanisms sodium channelopathies

Holger Lerche

Adam Strzelczyk

10:30 AM - 11:00 AM

Quality of Life - Lesson learned from Dravet Syndrome

Adam Strzelczyk

Hillary Savoie

4:30 PM - 5:00 PM

The Role of Patient Organisations: data, research and clinical trials; Lessons from The Cute Syndrome Foundation

Hillary Savoie

Nicola Specchio

5:00 PM - 5:30 PM

SCN2A & SCN8A: is there a common seizure semiology?

Nicola Specchio

Cinzia Scarcelli

11:30 AM - 12:30 PM

European SCN8A Patient Advocates

Cinzia Scarcelli, Ben Clay, Roland Waegner

Rikke Steensbjerre M.

2:00 PM - 2:30 PM

SCN8A: genetics

Rikke Steensbjerre M.

Elena Gardella

2:30 PM - 3:00 PM

SCN8A: current therapies and prognostic factors

Elena Gardella

Elena Gardella

3:30 PM - 4:00 PM

SCN8A: natural history study

Elena Gardella

Miriam Meisler

4:00 PM - 4:30 PM

SCN8A: future therapies

Miriam Meisler

Steven Petrou

11:30 AM - 12:00 PM

SCN2A: future therapies

Steven Petrou

Katrine Johannesen

12:00 PM - 12:30 PM

SCN2A: current therapies

Katrine Johannesen

Kris Pierce

2:00 PM - 3:00 PM

Meet the other SCN2A families

Kris Pierce, Leah Schust Myers, Stefania Dantone, Anna Homann

Markus Wolff

3:30 PM - 4:00 PM

SCN2A: phenotypic spectrum and natural history study

Markus Wolff

Walid Fazeli

4:00 PM - 4:30 PM

SCN2A: episodic ataxia and other movement disorders

Walid Fazeli

Select a session:

L.M. Aras Portilla

9:15 AM - 9:45 AM

Dravet Syndrome - Take aways for the SCN2A/8A journey

L.M. Aras Portilla

Torbjorn Tomson

9:45 AM - 10:15 AM

SUDEP, what we know

Torbjorn Tomson

L.M. Aras Portilla

10:15 AM - 10:45 AM

Supportive technologies

L.M. Aras Portilla

Walid Fazeli

11:00 AM - 11:30 AM

General Q&A

Elena Gardella, Walid Fazeli

Alexandra Klotz

2:00 PM - 2:30 PM

CBD and Fenfluramine

Alexandra Klotz

Mette Schou Larsen

2:30 PM - 3:00 PM

Ketogenic Diet

Mette Schou Larsen

Elena Gardella

11:30 AM - 12:30 PM

Meet the expert

Elena Gardella

Walid Fazeli

11:30 AM - 12:30 PM

Meet the expert

Walid Fazeli

Book online accomodation now!

Event accomodation options available


ATTENDING THE CONFERENCE IN PERSON?
Hotel Dorint Venusberg Bonn

120 p/n

  • Double Superior Room
  • Breakfast included
  • At walking distance from the Conference location
  • Make your reservation mentioning the SCN8A/SCN2A Conference for discounted price
  • An Der Casselsruhe 1, Bonn, 53127
CAN'T BE THERE?
ATTEND THE CONFERENCE ONLINE

FREE

  • The platform for attending the Conference online is to be decided yet
  • The link for attending the conference remotely will be released asap
  • Available from mobile phone and computer
  • Both sessions can be viewed
  • Register now for free and keep informed
All the participating associations

Meet all our "families"!


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

The University Hospital Bonn will host the Conference in presence in its spaces, providing for rooms and support.

University Hospital of Bonn
our Event gallery

Have a look at previous SCN8A events


Since 2015, The Cute Syndrome Foundation has hosted the Annual SCN8A Clinician, Researcher, and Family Gathering, which is held in conjunction with the American Epilepsy Society (AES) Annual meeting.


Except for the 2020 Gathering, that was fully virtual due to COVID-19, all the past events have been held in USA.

Find out more at The Cute Syndrome Foundation website


EVENT LOCATION

Universitätsklinikum Bonn
Klinik für Neuropädiatrie
Venusberg-Campus 1
Gebäude 82
53127 Bonn

+43 888-111-2222

events@www.scn2a-conference.eu