Our mission is to create an open data network to solve the mystery of SUDEP, in the hope of developing new life-saving interventions. The SUDEP Data Alliance provides real-world data that unites a global community of researchers, non-profits, mission-driven companies, and people impacted by epilepsy.
The inspiration and need for the SUDEP Data Alliance was born after our cofounder lost a friend, Robin, to SUDEP. We felt first hand the devastating impact that SUDEP leaves behind for families and loved ones. As fate would have it, the events leading to Robin’s death were all recorded, making this the first fully recorded SUDEP event in history.
Looking to the future, we’re here to carry on Robin's legacy and help prevent deaths due to this tragic complication of epilepsy.
"Robin was an incredibly caring person. Had many people depending on him for emotional support. Robin was both very smart and very funny. He loved the Buffalo Bills team, and we miss him a lot!" -Lisa, Robin's mother
Sudden Unexpected Death in Epilepsy (SUDEP) is the term used when a person with epilepsy dies without warning and where the post-mortem fails to establish any other cause of death. SUDEP claims the lives of over 1 in 1,000 people with epilepsy every year. Its cause is currently unknown.Learn more at sudep.org
Using the highest security standards, we use a “citizen science” approach to crowdsource unprecedented amounts of data from people and families with epilepsy worldwide. The SUDEP Data Alliance shares anonymized epilepsy data with network members. Members can also find and publish reidentified data sets, while collaborating with other researchers to accelerate the development of new interventions to prevent SUDEP.
Neureka brings peace of mind to people with epilepsy, while empowering a global data community to uncover the cause of SUDEP and prevent this devastating condition.
Our vision is to be the global leader in AI-powered neurological care, empowering people to live their best life.
Founded by cybersecurity specialists with U.S. headquarters in Nashville, Briya is an end-to-end data-retrieval platform that enables longitudinal health data to be securely retrieved in real time.
Briya leverages privacy-preserving decentralized architecture to seamlessly provide researchers and clinicians with better data, shortening the time to develop new medicines and treatments.