Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors
page
news-articles
tribe_events
Donate

Home » News » Social Media Listening in Congenital Ichthyosis

Social Media Listening in Congenital Ichthyosis

Quantitative and Qualitative Findings

DATE: 03/24/2026

BY: FIRST

by: Maëlla Severino-Freire, Céline Granier Tournier, Joëlle Malaab, Kira Süßmuth, Antoni Gostynski, Ángela Hernández-Martín, Juliette Mazereeuw-Hautier

This study highlights the needs of patients with CI that may guide improved management. Providing information, particularly through online tools developed in collaboration with patient associations, rare disease networks or digital education programs such as our e-TPE (digital therapeutic patient education) is essential. Read the full article here https://pmc.ncbi.nlm.nih.gov/articles/PMC12998599/

Related Information