Lolu hlelo lokusebenza yasungulwa ngu Association Maladie de Rendu-Osler, AMRO-HHT-France. Ihlose ukwenza lula ukuqapha ukopha kwamakhala (epistaxis), okuyisibonakaliso esikhulu salesi sifo. Ungasekela inhlangano ngokuyijoyina noma ngokwenza umnikelo, ukuze unikele entuthukweni ocwaningweni lwezokwelapha, nasekusatshalalisweni kolwazi kulabo abathintekayo yile nkinga yezakhi zofuzo engajwayelekile. Ukuthuthukiswa kwalolu hlelo kwaxhaswa ngokwezimali umkhakha wezempilo we-FAVA-Multi Rare Disease. Imininingwane: amrohhtfrance.contacts@gmail.com
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Nov 3, 2025