Although rare diseases are individually rare they are collectively common, affecting around one-in-17 people in the UK.¹ Health inequalities are systemic, avoidable and unfair. Acting now to tackle health inequalities in rare diseases will strengthen the NHS and improve outcomes for all.

Professor Bola Owolabi will host this session exploring why it is so important to address the health equity gap in rare diseases from policy through to lived patient experience.

Kath Bainbridge, head of rare diseases and emerging therapies at the Department of Health and Social Care will discuss Health Equity and England’s Rare Diseases Action Plan 2025.

Professor Rick Steeds, consultant cardiologist at Queen Elizabeth Hospital Birmingham, will discuss the impact of health inequalities at a clinical level and share some of the practical actions that can be taken to address the gap.

Loretta MacInnes, trustee of CamRARE, will discuss how health inequity has impacted her experience of being diagnosed with a rare condition.

Through collective action, we can improve the lives of the 3.5 million people living with rare disease and strengthen the health system for all who use it.

¹ The UK Rare Diseases Framework - GOV.UK. https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework

This session has been organised and funded by Amicus Therapeutics.
NP-NN-UK-00060325
DOP: March 2025