Synonyms: SMEI | Severe myoclonic epilepsy of infancy | Severe myoclonus epilepsy of infancy
A rare genetic developmental and epileptic encephalopathy characterized by infantile onset of intractable seizures that are often febrile and associated with cognitive and motor impairment.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version August 2026
Newly diagnosed with
Dravet syndrome?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Access to Life NGO
Access to Life is Ukraine’s first patient advocacy organization for rare genetic epilepsies, anchored in Dravet syndrome and SCN1A-related conditions. We support 600+ families nationwide, advocate for a national clinical protocol and drug access, and are building Ukraine’s National Patient Resource Centre and Patient Registry for genetic epilepsies.
Cure GABA-A Variants
Cure GABA-A a non profit organization with the sole focus to develop potential therapies for GABA-A Variants By partnering with world renowned researchers in GABA-A and the organization of patients for clinical trials.
Dravet Syndrome Foundation
The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.
FamilieSCN2A Foundation
Our MISSION is to accelerate research, build community and advocate to improve the lives of those affected by SCN2A-related disorders around the world.
Genetic Epilepsy Team Australia
Collaboration of research and care
Legacy Bridges Foundation, Inc
The Legacy Bridges Foundation, Inc. is a 501(c)3 non-profit organization founded to bridge the gap to support, educate and advocate for individuals, families and caregivers of those living with epilepsy and other seizure related disorders. The Legacy Bridges Foundation, Inc. is dedicated to helping champions live a sustainable life through participation of essential supportive programs and service
Mickie?s Miracles
To help families get into Level IV Pediatric Epilepsy Centers for diagnosis and treatment urgently -- and provide support to families for every season of the pediatric epilepsy journey.
Rare Epilepsy Network (REN)
Improving outcomes of people with rare epilepsies through an innovative collaborative infrastructure that drives urgent, patient-centered research, educaiton and advocacy.
ReNU2 Foundation
ReNU2 Foundation supports families affected by RNU2-2-related neurodevelopmental disease. We foster collaboration, raise awareness, and advance research—pursuing a world where every family has testing, informed care, community, and treatment.
SCN2A Asia Pacfic
To improve outcomes for families impacted by SCN2A through research and outreach programs
SCN2A Georgian Association
Spread awareness and to help families impacted by scn2a
Uganda Alliance of Patients Organization
Supporting patients to access quality, safe and patient-centered healthcare services.
Don't see your organization here. Let us know here.
Clinical Trials
For a list of clinical trials in this disease area, please click here.