Question 17089 — diseases

Summary

Mrs. Annie Genevard draws the attention of the Minister of Solidarity and Health to the daily problems encountered by people suffering from Tarlov's disease. This disease is not listed in the rare diseases database but is, however, listed for the Orphanet group, which has no recognized experts in France but 54 worldwide. Tarlov's disease is also codified and published at the level of the WHO. The Kremlin-Bicêtre hospital center is recognized as the reference center for this disease in France, but according to the patients' experiences, no concrete solution is provided to relieve their pain in the long term. Also, she would like to know the conditions for better recognition of this disease by health services. She would also like to know his opinion regarding the creation of a directory orphan and rare diseases for public services. This would allow us to have better knowledge of these diseases and treatment of patients, in their daily lives, more adapted to the suffering caused by their pathology.

Machine translation from French. The official text remains authoritative.

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