Living with a rare condition can significantly impact a person’s identity, as they may struggle to separate who they are from their condition. This internal conflict is often intensified during formative years, affecting self-perception and even sexuality. The stigma and discrimination associated with rare diseases, especially genetic ones, add further challenges. Carriers of genetic conditions face their own fears, such as discrimination, complicating their sense of self-worth. However, finding a sense of identity beyond the disease is vital. Connecting with others in similar situations can be transformative, offering a sense of belonging that helps individuals see themselves beyond their condition. This webinar will explore the impact of rare diseases on identity from various perspectives, including the experiences of individuals, families, and those living with different conditions.