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SHCA publishes a new report on rare disease health inequalities

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 SHCA and Genetic Alliance UK publish new report on patient involvement in NICE’s decision-making

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 […]

SHCA publishes a new report on delays to a rare disease diagnosis

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. […]

SHCA comments on specialised commissioning reform

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.

SHCA joins Health Awareness UK in raising awareness for rare diseases

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.

SHCA submits response to the NICE methods review

The SHCA submitted a response in December to NICE’s high-level consultation on its proposed ‘case for change’ for changes to its methods.

SHCA writes to the Secretary of State for Health and Social Care calling for social care reform

The SHCA Chairs sent a letter to the Secretary of State for Health and Social Care detailing the SHCA’s asks for social care reform, which was signed by representatives from 42 of our member organisations.

SHCA members respond to the Chancellor’s announcement

On the 8th April 2020, the Chancellor of Exchequer announced that charities across the UK will receive a £750 million financial support package to ensure they can continue their vital work during the coronavirus outbreak.

SHCA publishes reports on patient access to treatment

The SHCA has published two reports analysing the current system in England for determining access to treatment for patients with rare and complex conditions.

SHCA writes to the three party leaders urging them to commit to reversing NHS medicines rationing

The Telegraph has published an article on the letter signed by over 30 members of the SHCA on the rationing of treatments.