RAIRDA welcomes the publication of the NICE Quality Standard for Rare Disease. This quality standard marks the first developed collaboratively between NICE and the patient community. The development was led by the rare disease project group following discussions in the UK Rare Diseases Forum, the process has centred the voices of those with lived experience throughout the process.
This quality standard, made up of eight statements, informs standard of care and enables people living with rare diseases to know what good care looks like. It sets standards that if met could improve outcomes across the rare disease pathway – while rare diseases are individually rare, together they affect approximately 5% of the population, who until now had no standard to which they could refer when it came to their care.
Following the development of the statements by the project group, it was reviewed by the NICE Quality Standards Advisory Committee for inclusion in the NICE library of quality standards. Sue Farrington, co-chair of RAIRDA chaired the group, and the RAIRDA secretariat Principle Consulting co-ordinated the project.
The Rare Disease Quality Standard will provide a foundation for future improvement of the standard of care for people with rare disease, such as the potential renewal of the Rare Disease Framework, and improved data collection on the rare disease patient experience. It is a fantastic step in the process of raising the profile of rare diseases and the gaps in care experienced by patients.
Mark Minchin, associate director for quality at NICE, said: “We have been delighted at the success of this community-led process for drafting a quality statement for rare disease, and are pleased to be able to publish the standard in line with #RareDiseaseDay.
Sue Farrington, co-chair of RAIRDA and CEO of SRUK, said: “For too long, people living with rare diseases have faced uncertainty, delays, and unacceptable variation in the care they receive. The launch of this Quality Standard is a watershed moment. For the first time, we have a clear, measurable framework that defines what good care should look like for every rare disease patient across England and Wales.
As a patient organisation leader and co-chair of RAIRDA, I have heard countless stories of people falling through the gaps. This standard is about closing those gaps—setting out the expectations, improving accountability, and giving patients and families confidence that their needs will be recognised and met. I believe it will drive real, lasting change for millions affected by rare conditions.”