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Autoimmune Diseases: Rare Diseases

Answer

The Government is committed to improving the lives of those living with rare diseases under the UK Rare Diseases Framework. We published the fifth annual England action plan in February 2026, where we report on the steps we have taken to advance the priorities of the framework.

The National Institute for Health and Care Excellence (NICE) published a Quality Standard for Rare Diseases in February 2026 covering diagnosing, managing and treating rare diseases in children, young people and adults. NICE Quality Standards are concise statements designed to drive measurable improvements in care, and Integrated Care Boards are expected to take them fully into account in the design of services that meet the needs of their local populations.

Rare autoimmune rheumatic diseases, such as lupus, scleroderma, myositis, Sjögren’s disease and vasculitis, do not each have their own dedicated service specifications. Instead, care for these conditions is delivered through Specialised Rheumatology Services and Specialised Immunology Services, alongside linked services including renal, dermatology, endocrinology, hepatology and neurology. These service specifications set out the core requirements for clinical teams and how they should coordinate patient care. Where a specific care coordinator role is not defined within the specification, clinical nurse specialists often take on this responsibility.

The National Disease Registration Service (NDRS) in NHS England collects, curates, quality assures and analyses data on people with rare and congenital conditions across the whole of England. NDRS continues to develop approaches to improve rare disease case ascertainment through collection and linkage of multiple datasets. For rare autoimmune conditions specifically, NDRS has reported on several of these conditions within the Rare Conditions Registration Statistics and has published several peer-reviewed articles in this area.

NHS England requires data submission to the relevant Specialised Services Quality Dashboard as part of contractual requirements. These often include specific patient experience measures such as quality-of-life scores. In the future, it is expected that the Department will maintain a national framework of standards, service specifications and policies to support services.

Secondary information

Type

Written question

Reference

HL779

Session

2026-27

Grouped for answer

Yes

Subjects

Health services Standards Rare diseases Autoimmune diseases

Link

View this Written question on www.parliament.uk