Mental health challenges are a pervasive yet often overlooked aspect of people living with rare diseases. For individuals with IgG4-RD, a rare inflammatory condition that affects multiple organs, often leading to tissue swelling, mass formation, and organ dysfunction, the burden extends beyond physical symptoms to significant emotional and psychological stress. The uncertainty of disease progression, the burden of managing complex symptoms, and the challenges in accessing specialized care contribute to elevated stress, anxiety, and depression among individuals living with IgG4-RD and their caregivers. However, despite the clear need for mental health support, access to appropriate resources remains limited.

Mental Health for Rare and IgG4-RD Life are investigating these challenges through an online survey with members of the IgG4-RD community.