EpiCARE AGM London February 2019 Allison Watson & Isabella - PowerPoint PPT Presentation

EpiCARE AGM London February 2019 Allison Watson & Isabella Brambilla

EpiCARE EPAG Advocates that actively Isabella Brambilla Allison Watson Dravet, IT Ring20, UK participate in meetings, working EPAG Coordinator Deputy Coordinator groups and initiatives. Sarka Kanova EPISTOP, CZ Secretary Nuria Pombo Emma Nott Barbara Nicol Myra de Groot Anita Noordhoff Carol Anne West Syndrome, Partridge CDKL5, UK H4H, UK Epilepsy Spain, ES Dravet, NL KCNT1, NL Spain Additional EpiCARE EPAG Association Emma Williams Nathalie Coque Representatives that follow in our Ann Sophie Hallet Fabrizio Mistretta Katia/Ennio Santoro Paratonnerre Matthews Friends, Dravet , FR PCDH19, IT Lennox Gastaut, IT work and are invited to Dravet, FR FR UK participate/provide input from time- to-time. Marie Emmery Judette Your EpiCARE EPAG

Let us introduce ourselves…

Let us introduce ourselves…

Working Group Involvement Active  Carol-Ann / Barbara • WP10 Dietary Treatments  Allison / Isabella • WPI eDatabase • WPII Guidelines  Isabella / Myra New!  Emma N • WP3 Neuroimaging  Isabella • WP4 Neurophysiology  Barbara / Katia • WP7 Targeted Medical Therapies  Emma N • WP8 E-pilepsy  Sarka • WP9 Neonatal Seizures

Working Group Involvement Inactive • WP2 Lab Diagnostics • WPII Education and Training • WP5 Neuropsychology • WPIV Research • WP6 Neuropathology • WPV Clinical Trials • WP11 Dissemination We would like to work with you! “Nothing about us, without us”

Reach Can you help us extend our EPAG reach?

EpiCARE to focus on the origin of the rare disease, finding more effective, targeted treatments for epilepsy and Our Strategic beyond, looking at the holistic needs of patients with rare and complex Priorities epilepsies specifically behaviour, development and seizure control. • Take a holistic approach • Find a cure, find more effective treatment! • Build personal capacity to lead healthy and independent lives • More research …! • Spread the knowledge of the network • Education, education, education

Collaboration across ERN EPAG’s

• Outcomes and Guidelines • Research and Registries • Training and Education • Digital Health and Cross border • Communications Roadmap • Integration into National Health Systems Transversa l Groups Sharing Regular Good Steering Practices Meetings

How we can • Extend our EPAG network/reach • Assist with dissemination to help… patients/patient families • Utilise our professional skills in WP activities • Help with Integration of ERN’s into National Health Systems Bring the • Help achieve what patients want patient voice to the table

Thank you! epag.epicare@gmail.com