Improve Our Mental Health! ++

https://www.eurordis.org/publications/improve-our-mental-health/ “My symptoms prevent me from leading a normal life: working, socialising, and even studying are difficult. They greatly affect my daily life and altogether, cause anxiety and depression.” These are the words of one person living with a rare disease in Italy. However, their experience is far from unique, as shown by the latest Rare Barometer survey results. Seven in ten people living with a rare disease, or living alongside someone who does, report poor mental health. That is comparable to the levels of distress recorded during the COVID-19 pandemic. The difference is that for the rare disease community, this is not a passing crisis. It is daily life, with no end date in sight. Behind the numbers This insight comes from the latest Rare Barometer survey, EURORDIS’s flagship tool for turning lived experience into evidence-based advocacy. The questionnaire was shaped by a review of existing literature, verified by numerous experts, and was tested by the rare disease community prior to publication through assistance from national alliances and federations. For the first time, the survey also asked family members how they felt living alongside someone with a rare disease, providing a more comprehensive account of what the entire rare disease community needs to live well. Among people living with a rare disease specifically, 45% report moderate to severe depressive symptoms and 38% report clinically significant anxiety: both seven times the rate seen in the general EU population1. The rates are highest among those with a reduced quality of life, severe disabilities, or daily pain, and among those who experience discrimination linked to their condition. https://www.linkedin.com/pulse/from-evidence-action-closing-mental-health-gap-rare-disease-care-2fzge/