England and Scotland have published action plans for 2026. They focus on four priorities: helping patients get a final diagnosis faster increased awareness of rare diseases among healthcare professionals better coordination of care improved access to specialist care, treatment and drugs England A new Action Plan for Rare Diseases 2026 was launched in England Scotland The Scottish Government has published a progress
A new quality standard published by NICE sets out what good care should look like for people living with rare diseases across the NHS. The standard includes eight key statements designed to improve diagnosis, support, treatment access and research opportunities for people with rare conditions. The standards set out a clear, nationally recognised benchmark for the standard of care people with rare
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