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New report on European comparisons to the assessment of rare disease treatments

The SHCA has published a progress report on learnings from other European countries in the assessment of new rare diseases treatments. It builds on the findings from our 2024 report that found that many rare disease patients are still waiting too long to access new treatments, and in some cases are missing out altogether on […]

SHCA and Genetic Alliance UK publish a progress report on patient involvement in NICE decision-making

The SHCA and Genetic Alliance UK have published a progress report on patient involvement in NICE decision-making. The report follows on from our 2023 report, Strengthening the patient voice in NICE’s decision-making, which set out our members’ experiences of working with NICE across the HTA process – looking at what works well and where patient […]

SHCA and Genetic Alliance UK publish a position statement calling for a new UK Rare Diseases Framework

The UK Rare Diseases Framework is due to come to an end in January 2026. The Specialised Healthcare Alliance and Genetic Alliance UK are urgently calling for the renewal of the UK Rare Diseases Framework, and for the development of a new Modern Service Framework for Rare Diseases in England, to ensure the rare conditions […]

SHCA publishes new report ‘Are you okay? Rare diseases and mental health – A case study report’

Mental health challenges often arise as a direct or indirect consequence of a rare condition. The uncertainty of diagnosis, limited treatment options, fragmented care, and social stigma all combine to impact mental wellbeing. The SHCA and its member organisations have long been concerned that, despite mental health being an integral part of living well with a rare condition, it […]

SHCA publishes new engagement toolkit for specialised commissioning

As of 1 April 2025, 42 Integrated Care Boards (ICBs) took on responsibility for commissioning 70 specialised services, previously managed by NHS England (NHSE). NHSE has retained around 100 specialised services, including all highly specialised services. This means that, for the first time, there may be a need to engage with stakeholders at a local […]

SHCA, Genetic Alliance UK and the Neurological Alliance publish open letter to Wes Streeting and Sir Jim Mackey on NHS England reform

The Government recently announced that NHS England will be merged into the Department of Health and Social Care (DHSC), with the aim of reducing bureaucracy and driving efficiency. The reform was announced as Integrated Care Boards (ICBs) take on commissioning responsibility from NHS England for some specialised services, and was accompanied by significant planned headcount […]

SHCA publishes new report on learnings from specialised commissioning delegation so far

The Specialised Healthcare Alliance (SHCA) has published a new report setting out learnings from the delegation of specialised commissioning since April 2024, and lessons for the upcoming full delegation from April 2025 onwards. You can read the full report here. In autumn 2024, six months on from the delegation of specialised commissioning responsibility from NHSE […]

SHCA and Genetic Alliance UK publish new report on calling for the renewal of the UK Rare Diseases Framework

The Specialised Healthcare Alliance (SHCA) and Genetic Alliance UK have published a new report the UK Rare Diseases Framework, reflecting on progress made against the four Framework priorities across all four UK nations. Following engagement with SHCA members, the report draws out examples of progress made and opportunities to go further in each nation. Together, […]

SHCA publishes a new report calling for a specific focus on rarity in NICE’s methods and processes

The Specialised Healthcare Alliance (SHCA) has published a new report calling for rarity to be prioritised in future updates to NICE’s methods and processes, looking at the impact of changes introduced as part of NICE’s recent methods and processes review. Following engagement with SHCA members and corporate supporters who have participated in a recent NICE […]

One year on: SHCA publishes follow up report on delays to diagnosis

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 […]