FIRST Patient Voice Survey Finds Rare Skin Disease Takes Toll Far Beyond the Skin
The Foundation for Ichthyosis & Related Skin Types (FIRST) today announced results from its Patient Voice Survey showing that nine in 10 people affected by ichthyosis and related skin types reported emotional or psychological impacts from their condition. The first major survey of people and family members affected by these rare genetic skin disorders captures the lived experiences of patients and caregivers and shows how ichthyosis can affect daily routines, social relationships, access to care, treatment burden, and hopes for better therapies.
