Transformative Advocacy

Today, more people with epilepsies are becoming more active and engaged in their healthcare care than ever before. 

As patient communities are vital to our work now and in the future, we outline our commitment to responsible and ethical work with them. We define patient communities broadly to encompass all who are integral to the patient which includes individual persons with epilepsies, their caregivers and family members, patient advocacy leaders, and patient organizations.

We put patients at the center of everything we do. Together, we address the sudden death in epilepsy (SUDEP) complex sets of challenges existing around individuals, including stigma and discrimination so that everyone can thrive.

We are making our ways of working to address the current and future needs of patients, so we deliver the breakthroughs that will change their lives.

Turning words into action

Continued dialogue on the conceptualization of the first SUDEP Predictive Medical Device Prototype to evolve our approach, improve the services around our prototypes and deliver solutions that improve lives.

Whole person healthcare

People with epilepsy are people first and more than the conditions they are managing. The urgency to help people with epilepsies, and their family members and caregivers live their most confident lives, drives our work in developing SUDEP therapeutic solutions that reflect their lived experience.

Everyone and Everywhere

We advocate for a world in which everyone can move forward on their health journey with confidence, with the belief that better health is possible for everyone and everywhere. This means that our commitment considers the differences in people’s lives, ensuring opportunities for everyone.

Meaningful partnership

Our collaboration with patients is paramount to achieving the NEURONSENSE mission, to save thousands of lives per year, by finding the first SUDEP predictive biomarker and creating the first SUDEP Predictive Medical Device. We’ve recently launched the NEUROSENSE Patient Advisory Board to create an environment where PWE, families, clinicians, and NEUROSENSE Consortium all work together as partners to co-design the SMD Prototype and improve NEUROSENSE overall strategy in best addressing the needs of PWE, carers, and families.

Awareness to action

We strive to support people to disrupt the status quo – to give voice to their perspectives on seizure prediction and related matters, to influence the design of solutions to elevate the conversation on SUDEP, and to implement measures to transform epilepsy care outcomes.

Redefining needs on SUDEP care for PWE

Among deaths directly attributable to epilepsy or seizures, SUDEP is the leading cause. At NEUROSENSE, we believe that significant challenges remain for PWE at risk of SUDEP, despite recent progress. Despite new medications and increased public awareness, there remains an inadequate focus on the full spectrum of mental and physical health issues that PWE, caregivers, and families face.

Get involved!

Nothing we do at NEUROSENSE would be possible without PWE and caregivers who motivate us everyday to be better scientists, advocates, and change-makers. This work requires cross-sector collaborations and partnerships to create the systemic change needed.