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Social Media Listening in Congenital Ichthyosis: Quantitative and Qualitative Findings
Maëlla Severino-Freire1, Céline Granier Tournier1, Joëlle Malaab2
1Dermatology Department, Reference Center for Rare Skin Diseases, Centre Hospitalier Universitaire de Toulouse, 24 chemin de Pouvourville, Toulouse, 31059, France, 33 0 33 5 67 77 8.
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This study analyzed social media posts from patients with congenital ichthyosis and their caregivers across Europe and found that users, primarily young women, discussed hygiene care, psychological impact, therapeutic challenges, and lack of disease awareness. This allowed for the identification of unmet needs and potential actions to improve patients' quality of life.
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