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

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

Sep 09, 2022 129 likes •276 views

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

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EpiCARE AGM

London February 2019

Allison Watson & Isabella Brambilla

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Your EpiCARE EPAG

Isabella Brambilla Dravet, IT EPAG Coordinator Emma Nott H4H, UK Carol Anne Partridge CDKL5, UK Barbara Nicol Epilepsy Spain, ES Myra de Groot Dravet, NL Anita Noordhoff KCNT1, NL Nuria Pombo West Syndrome, Spain Sarka Kanova EPISTOP, CZ Secretary Allison Watson Ring20, UK Deputy Coordinator

EpiCARE EPAG Advocates that actively participate in meetings, working groups and initiatives.

Association Paratonnerre FR Marie Emmery Judette

Nathalie Coque Dravet, FR

Ann Sophie Hallet

Dravet, FR

Fabrizio Mistretta PCDH19, IT Emma Williams Matthews Friends, UK Katia/Ennio Santoro Lennox Gastaut, IT

Additional EpiCARE EPAG Representatives that follow in our work and are invited to participate/provide input from time- to-time.

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Let us introduce ourselves…

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Let us introduce ourselves…

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Working Group Involvement Active

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

New!

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Working Group Involvement Inactive

  • WP2 Lab Diagnostics
  • WP5 Neuropsychology
  • WP6 Neuropathology
  • WP11 Dissemination
  • WPII Education and Training
  • WPIV Research
  • WPV Clinical Trials

We would like to work with you! “Nothing about us, without us”

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Reach

Can you help us extend our EPAG reach?

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Our Strategic Priorities

EpiCARE to focus on the origin of the rare disease, finding more effective, targeted treatments for epilepsy and beyond, looking at the holistic needs of patients with rare and complex 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
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Collaboration across ERN EPAG’s

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Transversa l Groups Regular Steering Meetings Sharing Good Practices

  • Outcomes and Guidelines
  • Research and Registries
  • Training and Education
  • Digital Health and Cross border
  • Communications Roadmap
  • Integration into National Health Systems
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How we can help…

  • Extend our EPAG network/reach
  • Assist with dissemination to

patients/patient families

  • Utilise our professional skills in

WP activities

  • Help with Integration of ERN’s

into National Health Systems

  • Help achieve what patients want

Bring the patient voice to the table

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epag.epicare@gmail.com

Thank you!