Beyond diagnosis and treatment: Delivering holistic care for people living with rare diseases May 2026

https://www.eurordis.org/beyond-diagnosis-and-treatment-delivering-holistic-care-for-people-living-with-rare-disease/ Living with a rare disease impacts every aspect of a person’s life, from education and employment to mental health and social participation. Yet, regardless of whether someone receives a diagnosis or access to treatment, health and social care systems often fail to support them.