SHCA publishes a new report on rare disease health inequalities

Published October 19, 2023

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 limited access to high-quality care, medicines and wider support. This, in turn, drives poorer and ultimately avoidable differences in health outcomes and healthcare experiences for those with rare diseases.

When health inequalities are discussed in policy, rare diseases are not often included in the discussion – this report brings rare diseases into the health inequalities agenda and highlights opportunities for policymakers to address challenges that limit equitable access to health and care services for people living with them. We hope that by taking forward these recommendations, everyone with a rare disease will be afforded equal opportunities to live as healthily as possible.

You can read the full report here.

Thank you to SHCA members who helped in the development of the report, grounding the findings in lived experience of health inequalities right across the rare disease community.