Invisible illnesses: Shining a light on the psychosocial impact of rare diseases

Rare diseases (RDs) impact a small proportion of the population yet can be very debilitating and dangerous. People with RDs suffer unique and substantial obstacles as a result of the infrequent nature of their medical diseases, such as a lengthy diagnostic process, insufficient clinical care, and restricted access to appropriate medications. Historically, patient groups have been the primary drivers behind increasing awareness about these diseases and fighting for government supportive legislation. The burden of RD on patients, caregivers and families, healthcare systems, and society as a whole deserves more exposure and appreciation. Taken together, scientific, social, ethical, and political responsibilities call for more RD inclusion and integration in research and policies, thereby advancing the goal of the UN Resolution to "leave no one behind."