The importance of Rare Disease is increasingly being appreciated by the NHS, industry, research funders, policy makers and others. COVID-19 and its impact on the management of patients with chronic disease highlighted the vulnerabilities of the rare disease population (around 3.5 million in the UK) and revealed an urgent need to improve resilience in care delivery for rare conditions.
Newcastle University and the Newcastle upon Tyne Hospitals NHS Foundation Trust have a long and distinguished history in rare disease care and research delivery. Our vision is to strengthen and enhance Newcastle as a seat of multidisciplinary knowledge and expertise in the field of rare diseases, expanding good practices to reach new disease populations and promote cross-sector innovation for patient benefit. Our work has transformed clinical care for patients and is built on a track-record of highly successful working with many stakeholder groups, including Industry. The Rare Disease NUCoRE (Newcastle University Centre of Research Excellence) is stimulating interdisciplinary collaborations internally and with the clinicians in Newcastle Hospitals, whilst enhancing the external profile of rare disease at Newcastle as a whole. This ‘Newcastle Rare Disease’ community brings a “360 degree” approach to rare disease. Even though each rare disease patient faces their own personal challenges, there are shared aspects of rare diseases both in terms of patient experience and the approaches we need to take to improve treatment.
NIHP and the Rare Disease NUCoRE are working together on exciting and promising events and research to help improve the lives of those living with a rare disease.
For more information about the Rare Disease NUCoRE please read our brochure.