Improving equity and quality of care for people living with rare conditions continues to be a key priority across health and care systems. It is encouraging to see organisations such as NICE developing clear quality standards for rare diseases, helping to define what good, consistent care should look like for individuals and families.
Rare disease quality standard
The rare diseases quality standard (QS214) sets out important expectations around high-quality care, aiming to improve consistency, outcomes and access to appropriate support across health and care services.
We encourage members to explore these standards to better understand what you should be able to expect from services and how they may relate to your own care experiences.
Our Support Team is also available if you have any questions.
Equity for rare report
Alongside this, it is equally important to look beyond clinical standards and consider what “equity for rare” truly means in practice.
The Equity for Rare: delivering fair healthcare systems report from Genetic Alliance UK takes a deeper look at the inequalities experienced by people living with rare conditions and sets out clear recommendations for building fairer, more inclusive healthcare systems.
Together, these pieces of work highlight both the importance of setting clear standards for care and the need for continued advocacy and collaboration across patient organisations, clinicians and policymakers to ensure that equity for rare is not just an aspiration but a reality for all.
