Ehlers-Danlosov syndrom. Adéla Odrihocká

from Needo Talks · host Eva Nemčková a Lenka Bártová

Cesta k diagnóze vzácného onemocnění bývá dlouhá a složitá, v průměru trvá pět let. U Ehlers-Danlosova syndromu to trvá přibližně 15 let. Adéla Odrihocká je místopředsedkyní pacientské organizace Ehlers-Danlosův syndrom a syndrom hypermobility, z.s., členkou Rady České asociace pro vzácná onemocnění a sama s touto diagnózou žije. Již několik let se angažuje v oblasti vzácných onemocnění a věnuje se pacientské advokacii (hájení zájmů a práv osob se vzácným onemocněním a zdravotním postižením), aby přispěla ke změnám, které jsou v této oblasti nutné.

Episode metadata supplied by the publisher feed · Published Sep 25, 2024

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Ehlers-Danlosov syndrom. Adéla Odrihocká

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