What SUDEP Aware does

SUDEP Aware is a Toronto, Canada-based non-profit charitable organization dedicated to raising awareness about Sudden Unexpected Death in Epilepsy (SUDEP) and supporting bereaved families. Founded in 1996 as part of the broader SUDEP Action / Epilepsy Bereaved movement, the organization provides education on SUDEP risk factors, grief and bereavement support to families affected by SUDEP, and facilitates research through its co-founding role in the North American SUDEP Registry (NASR) and the Canadian Pediatric SUDEP Registry (CPSR). Its primary deliverables are educational content (research summaries, expert-authored articles, family stories) distributed through the SUDEP Global Conversation website in English, French, and Spanish, plus advocacy for mandatory SUDEP reporting by medical examiners and coroners.

Name

SUDEP Aware

Legal name

SUDEP Aware

Website

https://sudepglobalconversation.com

Company type

Private

Founded year

1996

Operating status

Operating

Short description

SUDEP Aware is a Toronto-based non-profit that provides SUDEP education, bereavement support for families, and research collaboration through SUDEP registries (NASR, CPSR) and the multilingual SUDEP Global Conversation knowledge platform.

Ownership category

akta.pro rank

Headquarters

HQ city

Toronto

HQ country

Canada

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Marketing channels4 records

Core offering

SUDEP Aware is a nonprofit advocacy organization that educates patients, families, and healthcare professionals about Sudden Unexpected Death in Epilepsy (SUDEP) and provides bereavement support and resources to families affected by SUDEP. It co-publishes the SUDEP Global Conversation, a multilingual online knowledge repository featuring expert-authored research articles and family stories, and co-manages SUDEP research registries (NASR and CPSR) connecting bereaved families with researchers.

Product overview

SUDEP Aware is not a technology product company; it is a charitable advocacy organization that operates the SUDEP Global Conversation website as an informational and educational resource. The site serves as a knowledge repository about sudden unexpected death in epilepsy (SUDEP), providing research summaries, articles from health professionals, family stories, and a bibliography of SUDEP-related scientific literature. No commercial products, software, or technology services are offered.

Differentiator

Problem solved

Functional benefit

Products and services

• SUDEP Global Conversation A multilingual (English, French, Spanish) online knowledge repository on sudden unexpected death in epilepsy, co-published with SUDEP Action UK. It provides expert-authored research articles, family stories, facts, and action-oriented content for people with epilepsy, families, healthcare professionals, and advocacy organizations worldwide.
• North American SUDEP Registry (NASR) A SUDEP research registry formed in 2012 by epileptologists, epidemiologists, medical examiners, scientists, and affected family members from the US and Canada in collaboration with SUDEP Aware. It collects biospecimens and clinical data from SUDEP cases and living controls to facilitate research into SUDEP mechanisms, risk factors, and prevention strategies.
• Canadian Pediatric SUDEP Registry (CPSR) A registry developed through collaboration with the Canadian Pediatric Epilepsy Network and the Canadian Pediatric Surveillance Program, with support from the SUDEP Aware ecosystem. It collects standardized data on SUDEP cases in children under 18 across Canada on a monthly basis and shares complementary data with NASR for pooled North American analyses.

Quantifiable outcome

• The UK national sentinel clinical audit (supported/partly enabled by SUDEP Action / SUDEP Aware ecosystem) demonstrated ~1,000 epilepsy-related deaths per year in the UK, of which ~500 were SUDEPs, with 42% potentially preventable
• +2 more outcomes

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Twelve partnerships are on record, tiered flagship / core, core and minor.

• SUDEP Action UK (working name of Epilepsy Bereaved)flagship / coreStrategic or Co-development PartnerSUDEP Aware Canada and SUDEP Action UK co-publish the SUDEP Global Conversation, a globally recognized multilingual knowledge repository on SUDEP. Together they organize international workshops, support research initiatives, and advocate for SUDEP awareness and policy change worldwide. The two organizations share editorial oversight of the Global Conversation and collaborate on awareness campaigns, family support networks, and the SUDEP Research Initiative with King's College London.
• University of Oxford (UK)coreStrategic or Co-development PartnerThe University of Oxford collaborated with SUDEP Action (a closely linked partner) on COVID-19 impact research involving people with epilepsy, their families, and health professionals. Researchers at Oxford partnered on international surveys to understand pandemic-related challenges and inform future support and intervention programs.
• Newcastle University (UK)coreStrategic or Co-development PartnerNewcastle University worked alongside the University of Oxford and SUDEP Action on the COVID-19 international impact research program, which included three key surveys targeting people with epilepsy, caregivers, healthcare professionals, and bereaved families across the world.
• North American SUDEP Registry (NASR)flagship / coreStrategic or Co-development PartnerNASR was formed in 2012 by epileptologists, epidemiologists, medical examiners, scientists, and affected family members from the US and Canada in collaboration with advocacy organizations including SUDEP Aware. Its mission is to facilitate research into SUDEP mechanisms and risk factors and to identify prevention strategies. NASR collects biospecimens and clinical data from SUDEP cases and provides these to the broader research community.
• Canadian Pediatric SUDEP Registry (CPSR)coreStrategic or Co-development PartnerThe CPSR was developed through collaboration with the Canadian Pediatric Epilepsy Network and the Canadian Pediatric Surveillance Program, with support from the SUDEP Aware ecosystem. It collects standardized data on SUDEP cases in children under 18 across Canada on a monthly basis and shares complementary data with NASR for pooled North American analyses.
• King's College London — SUDEP Research InitiativecoreStrategic or Co-development PartnerThe SUDEP Research Initiative is a collaboration between King's College London and SUDEP Action (linked organization to SUDEP Aware) that funds and coordinates research into the mechanisms and prevention of SUDEP. This initiative represents a formal research funding and coordination partnership advancing the scientific understanding of SUDEP.
• The Hospital for Sick Children, Toronto (Comprehensive Epilepsy Program)coreStrategic or Co-development PartnerElizabeth J Donner, Director of the Comprehensive Epilepsy Program at The Hospital for Sick Children in Toronto, is a co-author of the SUDEP Global Conversation article on registries and a key collaborator in the Canadian Pediatric SUDEP Registry. This institution provides clinical expertise and research infrastructure for SUDEP research in Canada.
• NYU Langone Medical Center — Comprehensive Epilepsy CentercoreStrategic or Co-development PartnerOrrin Devinsky, Director of the Comprehensive Epilepsy Center at NYU Langone Medical Center in New York, is a co-author of the SUDEP Global Conversation article on registries and a collaborator in the North American SUDEP Registry. This institution provides clinical and research leadership for NASR.
• Danny Did Foundation (USA)coreStrategic or Co-development PartnerThe Danny Did Foundation, a Chicago-based advocacy organization focused on SUDEP awareness, spearheaded the Illinois 'Danny Stanton SUDEP Act' legislation that mandated SUDEP reporting to NASR. It works in coordination with the broader SUDEP advocacy ecosystem including SUDEP Aware-connected organizations to advance SUDEP awareness, policy, and research.
• Canadian Pediatric Epilepsy Network / Canadian Pediatric Surveillance ProgramcoreStrategic or Co-development PartnerThese Canadian national surveillance programs collaborated to develop the Canadian Pediatric SUDEP Registry (CPSR), enabling systematic data collection on SUDEP cases in children across Canada and contributing to the broader North American registry ecosystem.
• Latin American epilepsy organizations and professionalsminorStrategic or Co-development PartnerSUDEP Aware, through the SUDEP Global Conversation, collaborates with Latin American neurologists, the Latin American Committee of the International Bureau for Epilepsy (IBE), and researchers in Brazil and Chile to publish action-oriented content on SUDEP in the Latin American context. This includes addressing the lack of SUDEP epidemiological data in the region and advocating for inclusion in the Pan American Health Organization's epilepsy strategy.
• International League Against Epilepsy (ILAE) / International Bureau for Epilepsy (IBE)coreStrategic or Co-development PartnerThe SUDEP Global Conversation is aligned with and referenced by the ILAE and IBE. The Latin American Committee of the IBE (with President Tomás Mesa as author in the Global Conversation) and ILAE commissions on epidemiology actively collaborate on SUDEP research and awareness within the ecosystem of this organization.

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• Epilepsy Foundation: Largest US epilepsy patient advocacy organization with broad programming across seizure first aid, research, and public policy. Broader portfolio than SUDEP Aware but overlaps significantly on SUDEP awareness, bereavement support, and policy advocacy.
• Epilepsy Action: UK-based epilepsy charity providing information, support, and campaigning on behalf of people with epilepsy. Shares geographic market with SUDEP Action/SUDEP Aware and overlaps on patient information and family support services.
• American Epilepsy Society: US professional society for clinicians and researchers in epilepsy, including SUDEP-focused working groups and conferences. Provides the clinical research infrastructure and dissemination channels that support SUDEP Aware's registry and content work.
• International League Against Epilepsy (ILAE): Global professional organization for epilepsy clinicians and researchers, with commissions on epidemiology and SUDEP. The SUDEP Global Conversation is referenced and aligned with ILAE materials, making ILAE a key ecosystem counterpart.
• International Bureau for Epilepsy (IBE): Global umbrella organization for national epilepsy patient associations, including the Latin American Committee that collaborates with SUDEP Aware on regional SUDEP awareness. Overlaps in advocacy, multilingual content, and patient community-building.

Direct peers

• Danny Did Foundation: Chicago-based US advocacy organization focused on SUDEP awareness that spearheaded the Illinois 'Danny Stanton SUDEP Act' legislation. Operates in coordination with the broader SUDEP advocacy ecosystem including SUDEP Aware to advance SUDEP awareness, policy, and research in the United States.
• Anita Kaufmann Foundation: US nonprofit dedicated to SUDEP education and awareness, distributing free resources and supporting SUDEP-related programs. Operates in the same niche SUDEP-awareness space as SUDEP Aware with overlapping donor and family-support audiences.
• SUDEP Action UK: Working name of Epilepsy Bereaved, founded 1996 in the UK by bereaved families. Co-publisher of the SUDEP Global Conversation with SUDEP Aware and the organization's closest international counterpart, sharing editorial oversight, family support networks, and the SUDEP Research Initiative with King's College London.
• Citizens United for Research in Epilepsy (CURE): US-based nonprofit focused on epilepsy research funding, including SUDEP. Competes for overlapping donor dollars and research-advocacy positioning, with similar interests in advancing SUDEP mechanisms and prevention science.

Regional players

• Canadian Epilepsy Alliance: Canadian umbrella of provincial epilepsy associations supporting people with epilepsy and their families. Operates in SUDEP Aware's home market with overlapping family-support and awareness mandates, and serves as a regional counterpart for policy engagement in Canada.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks4 records

Key highlights5 records

Customer concentration

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Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about SUDEP Aware