Welcome to the France Lafora website.

We invite you to go to News to follow the latest information on research and all the initiatives undertaken to raise awareness of the disease and raise funds.

The Lafora disease is a genetic disorder that is classified as a progressive myoclonic epilepsy. It is an extremely rare, life-threatening neurodegenerative disease..

The 1st manifestations of this disease generally occur during second childhood and are characterised by epileptic seizures and myoclonic jerks. The course of the disease is marked by slow, progressive degeneration of the nervous system and deterioration of brain function, leading to complete dependence. The patient is then unable to move, speak or eat alone. Life expectancy can be as low as 10 years after the first neurological signs appear.

Loss of autonomy is very difficult for our children. When life was opening its arms to them, they find themselves trapped, with the disease disrupting all their plans. For them, there is no future. They will have to stop their studies, their sporting activities, they won’t be able to drive, they won’t be able to have a love life, their circle of friends will dwindle, they won’t become the young men or women that we, their parents, imagined them to be.

There is currently no treatment on the market that can cure or even slow the progression of the disease. Anti-epileptic and anti-myoclonic treatments are purely symptomatic. The protocols proposed to patients are based on their comfort, the aim being to limit generalised seizures, occipital seizures and action and rest myoclonus.

For our Lafora children, time is running out.

The research is therefore our one and only HOPE.