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. […]
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.