Written question asked by Jim Shannon (Democratic Unionist Party) on Wednesday, 15 January 2025, in the House of Commons. It was due for an answer on Friday, 17 January 2025. It was answered by Andrew Gwynne (Labour) on Thursday, 23 January 2025 on behalf of the Department of Health and Social Care.

Primary Biliary Cholangitis

Question: To ask the Secretary of State for Health and Social Care, what steps he is taking to increase (a) awareness and (b) understanding of primary biliary cholangitis among (i) general practitioners and (ii) other healthcare professionals.

Answer: The Government is committed to improving the lives of those living with rare diseases, including non-genetic rare diseases such as primary biliary cholangitis. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, to help patients get a final diagnosis faster, increase awareness of rare diseases amongst healthcare professionals, better coordinate care, and improve access to specialist care, treatment, and drugs. All four nations of the United Kingdom have published action plans setting out how these priorities will be delivered. We remain committed to delivering under the framework and will publish our fourth annual England action plan in 2025, which will report on progress. Actions include research to improve our understanding of the diagnostic journey and the development of innovative digital resources, making information on rare conditions easily available to healthcare professionals, including general practitioners. Continued development of educational resources through the NHS England Rare Disease Education Hub is helping to increase health care professionals’ awareness of rare conditions.

Secondary information