2025 Agenda

Individually rare, collectively common: your role in closing the health inequality gap

12 Jun 2025
Charter 3
Health inequalities , Mobilising change / improvement

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.

With expert facilitation from Health Innovation North West Coast (HINWC), participants will go through a rapid ‘mini-hack’ sequence, aiming to co-create innovative ideas and impactful solutions to reduce health inequalities in rare diseases.

We will bring together a multi-disciplinary team of representatives from NHS England, DHSC, the NHS, patient organisations, health inequality experts and the patient community. Discussion will be supported by HINWC, The MPS Society and Breaking Down Barriers to co-create ideas for impactful solutions to reduce health inequalities in rare diseases that can be scaled to all disease areas.

Join us to learn what you can do to tackle health inequalities in rare and beyond.

  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-UKI-00040325
DOP: March 2025

Jen Kohan
Jen Kohan, Head of Coaching and Engagement - Health Innovation North West Coast
Kerry Leeson Beevers
Kerry Leeson Beevers, Chief Executive - Alström Syndrome UK
Uma Ramaswami
Dr Uma Ramaswami, Consultant in Inherited Metabolic Disorders - Royal Free London NHS Foundation Trust
Bob Stevens
Bob Stevens, Group Chief Executive - The MPS Society

Supported by:

Amicus Therapeutics