The 2021 UK Rare Diseases Framework set out a national vision for the development of 4 priority areas: increasing the speed of diagnosis, increasing awareness of rare diseases amongst healthcare professionals, better coordination of care, and improving access to specialist care, treatments, and drugs.
Building on England’s first action plan published on 28 February 2022, the new rare diseases action plan builds on the previous plan’s efforts, which saw, amongst other developments, the development of digital tools for access to rare disease information, identification of over 1000 new complex diagnoses for people with rare disease, and the completion of innovative research studies.
The newest action plan sets out 13 new specific, measurable actions intended to drive further improvements and address areas of need. Included in the key commitments are focuses on data sharing between NHS England and Genomics England, evaluating the effectiveness of the UK Rare Diseases Framework, improving the manner in which rare disease services are commissioned, and improving the Be Part Of Research platform, making it easier for people suffering from rare diseases to take part in research and contribute to national effort for data collection. To compound this effort, evidence will be collected on the health inequalities faced by those with rare diseases for addressal by health services.
Helen Whately, Minister of State in the Department for Health and Social Care (DHSC), stated: “Rare diseases are individually rare but collectively common, affecting 3.5 million people in the UK… our rare diseases action plan will reduce health inequalities, help people participate in research and join up specialist services better for patients.” As 1 in 17 people will be affected by a rare disease at some point in their life, the government hopes that achieving their overarching vision by delivering improvements in diagnosis, awareness, treatment, and care will create a positive change for those suffering from rare diseases.
- England Rare Disease Action Plan 2023: main report. Department of Health & Social Care. https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2023/england-rare-diseases-action-plan-2023-main-report. Accessed 28th February 2023.
- UK government announces new rare diseases action plan for England. PMLive. https://www.pmlive.com/pharma_news/uk_government_announces_new_rare_diseases_action_plan_for_england_1488629?utm_source=pmlive&utm_medium=email&utm_campaign=pmlive_daily&. Accessed 28th February 2023.