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

Beyond diagnosis and treatment: Delivering holistic care for people living with rare diseases May 2026 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. https://www.eurordis.org/beyond-diagnosis-and-treatment-delivering-holistic-care-for-people-living-with-rare-disease/ How can Europe improve quality of life for people living with a rare disease beyond access to diagnosis and therapies? Our latest article explores three areas where European healthcare systems consistently fall short: building the evidence base for holistic care, addressing the mental health challenges that affect patients and families at every stage, and removing the barriers that prevent people from reaching the specialist expertise they need. These are the focus of the Evidence-Based Holistic Care, Mental Health and Specialised Healthcare tracks at our European Conference on Rare Diseases and Orphan Products (ECRD 2026), taking place on 3–4 June in Prague and online. https://www.rare-diseases.eu/ Registrations remain open for attending ECRD 2026 online https://events.eurordis.org/ecrd2026/register-now