Patient Advisory Board

Patients must be at the heart of healthcare, from prevention and awareness, through research and development, regulatory and health technology assessment processes, to service design and outcomes measurement. Working with patients throughout the process delivers better outcomes for patients, healthcare systems and for society.

Our Mission

With that in mind, we set up a Patient Advisory Board that will be implemented as a patient-centricity initiative, to provide added value by identifying patient priorities, bringing the patient perspective on living with the condition and the impact of different treatments into clinical research, and using their extensive networks to ensure patient involvement at different levels of the NEUROSENSE Project, supporting our consortium to be at the forefront of the patient-centricity reality and to have patient perspective embedded from the conceptualization of the SUDEP Medical Device prototype so that the project device reflects the needs of the epilepsy community. In this endeavor, PWE, caregivers, and families share their healthcare journeys with us so we can:

  • Understand their unique and invaluable perspectives and insights
  • Learn about their experiences with epilepsy
  • Ask for guidance and consult with them on issues that directly affect them
  • Incorporate their views and opinions into our strategy and all that we do, from the very early stages of research to the time when the SUDEP predictive device prototype is created.

The results obtained are expected to set the standards for patient involvement in the  research and development pipelines of the medical device industry. 

Our Partners

DRAVET PORTUGAL
DRAVET SINDROM
DRAVET SYNDROME FOUNDATION