The Psychological Needs of People living with a Rare Condition

In this literature review conducted by EURORDIS, we examine the psychological and psychosocial needs of people living with a rare condition and their families. The findings highlight that people living with a rare condition and their families face common and persistent challenges. These include chronic uncertainty, limited access to reliable information, stigma, social isolation, and difficulties navigating fragmented healthcare systems. Many individuals and caregivers also take on the role of coordinating care themselves, often without adequate support. The report emphasises that psychological needs evolve over time, particularly at key stages such as diagnosis, disease progression, and transition to adult care. Despite this, psychological and psychosocial support remains a major unmet need across the rare disease community. In response, the report calls for more integrated, family-centred and multidisciplinary care, with psychological support embedded throughout the care pathway and stronger links with patient organisations to better support individuals and families.