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Europe in general
The international name for this disease is Hereditary Spastic Paraplegia. It is part of the big family of spinocerebellar degenerative hereditary diseases in which the pathologies are somewhat intermediate and hard to differentiate especially in what is called the "complicated" form. However, the "pure" form of S-L is increasingly better known. Many studies are currently undertaken to better understand the main one, SPG4.
The disease of Strümpell-Lorrain
This spinal, and sometimes cerebellar, degeneration is clinically a part of cerebellar ataxias. That is why in France, we created a federation with the goal to unite all the European organizations (SCD EURO). Concomitantly, a medical network on spinocerebellar degeneration is being created.
For Friedreich's Ataxia and another one
CSC : French association for cerebellar diseases.
Hellenic Friedreich’s Ataxia Association,
Federación de Ataxias de España (FEDAES)