28/02/2026
TODAY IS Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. The date is chosen because in leap years it is February 29, the rarest date.
A rare disease is generally defined as a condition affecting fewer than 5 in 10,000 people (Australia/Europe) or fewer than 200,000 individuals in the US. There are over 8,000 known rare diseases, 80% of which are genetic, often resulting in serious, chronic, and complex health issues, commonly appearing in childhood.
Here a list considered as Rare Epilepsies:-
Alternating Hemiplegia of Childhood (AHC)
Angelman Syndrome (AS)
Benign Familial Neonatal Seizures (BFNS)
CDKL5 Deficiency Disorder
Cornelia de Lange Syndrome (CdLS)
Doose Syndrome/Myoclonic Astatic Epilepsy (MAE)
Dravet Syndrome
Dup15q Syndrome
Fragile X Syndrome (FXS)
GLUT1 Deficiency syndrome
Hypothalamic Hamartoma (HH)
Jeavons Syndrome/Epilepsy with Eyelid Myoclonia
KCNMA1-Linked Channelopathy 1.
Lennox-Gastaut Syndrome (LGS)
Migrating Partial Epilepsy of Infancy Malignant migrating partial seizures of infancy (MMPSI)
Ohtahara syndrome/early infantile epileptic encephalopathy (EIEE) Ohtahara Syndrome Pyridoxine-dependent epilepsy (PDE)
Rett syndrome Rett syndrome (RTT)
Ring 20/Ring Chromosome 20 Syndrome/r(20) Syndrome
Tuberous Sclerosis/Tuberous Sclerosis Complex (TSC)
West Syndrome/Infantile Spasms
Living with a rare disease does not only impact a person’s physical health; it impacts every facet of their life, their families and carers. That's why we are here to provide training, education and awareness to ensure a more inclusive life across NT & SA for those impacted by Epilepsy.
