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.

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

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.

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.

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

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

In a letter to the Editors of The Times, members of the SHCA raised their deep concerns with the reforms to NICE and called for all politicians standing for 2017 General Election to commit in their manifestos to reverse these recent reforms.