Question 11026 — diseases

Summary

Ms. Manon Bouquin draws the attention of the Minister of Health, Families, Autonomy and People with Disabilities to the treatment and research of fucosidosis, a rare, neurodegenerative genetic disease that is currently incurable. This pathology is caused by a deficiency in the enzyme alpha-L-fucosidase and leads to an accumulation of toxic substances in the body. This gradually leads to serious harm neurological, motor and organic. Due to its rarity, fucosidosis is little known and affected families face medical and social isolation. The MP would like to know what actions the Government is implementing to better recognize and support patients suffering from fucosidosis as well as their loved ones. She would also like to know the progress of national and European research on this pathology, particularly in terms of gene or enzymatic therapy, as well as the means provided to support research. Finally, she asks him what measures are planned to strengthen information, medical-social support and support for families faced with this rare and particularly trying disease.

Machine translation from French. The official text remains authoritative.

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