The SHCA has published a new report on reducing delays to a rare disease diagnosis, analysing the progress made over the past year against existing government actions and commitments. In June 2023, the SHCA published our original report, Navigating the labyrinth: reducing delays to a rare disease diagnosis. The report explored the impact of delays to a […]

Since 2013, specialised services for people with rare and complex conditions have been commissioned – the process of setting standards, planning and paying for care – by NHS England (NHSE) at the national level. In the last few years, NHSE has sought to involve local NHS commissioners more in the commissioning of specialised services, through […]

The SHCA has published the findings of our recent survey on mental health. Earlier this year we surveyed our charity members, representing a wide range of rare and complex conditions, on the importance and accessibility of mental health support.  The findings tell a clear story: for people living with a rare or complex condition and […]

With a UK General Election due in the coming year, the Specialised Healthcare Alliance (SHCA) and Genetic Alliance UK have joined forces to produce a manifesto, setting out priorities that should be taken forward by the next Government to ensure continued progress for rare and complex diseases. The manifesto sets out the shared perspective of […]

The SHCA has produced a report that shines a spotlight on health inequalities experienced by people with rare diseases, across the community. ‘Rare diseases, common inequalities: bringing rare diseases into the health inequalities agenda’ explores the unique set of challenges impacting people with rare diseases compared to those with more common conditions, which results in […]

The Specialised Healthcare Alliance (SHCA) and Genetic Alliance UK have published a new report on strengthening patient involvement in NICE’s decision-making, looking at the impact of changes introduced as part of NICE’s recent methods and processes review. Following engagement with SHCA members who have participated in a recent NICE technology appraisal, the report focuses on […]

The SHCA has produced a report exploring the impact of long waits for rare disease diagnoses and setting out recommendations to improve the system.  Navigating the labyrinth: reducing delays to a rare disease diagnosis was developed in recognition that a person’s rare disease journey begins not at the point of diagnosis, but possibly many years before. […]

NHS England (NHSE) and Integrated Care Boards (ICBs) have formed nine statutory joint committees to commission 59 specialised services deemed suitable and ready for greater ICB leadership.

The SHCA has recently partnered with Health Awareness UK on their 2021 Rare Diseases campaign, to celebrate Rare Disease Day and raise awareness of the needs of rare and complex disease patients.