Rare Disease in Newcastle: Progress and Future Priorities

Join us this International Rare Disease Day (Monday 28th February) to find out about the Newcastle University Centre of Excellence for Rare Disease uniting academics, researchers, clinicians and other experts from Newcastle University and Newcastle Upon Tyne Hospitals NHS Foundation Trust.

Victoria Hedley, Rare Disease Policy Manager, said: “The event will play an important step in advancing our rare disease mission in NHIP, specifically developing a regional rare disease identify and reaching out to engage with patients and other stakeholders across the North.”

Goals of the event:

• To showcase our new Newcastle Centre for Rare Disease Research, highlighting our mission to consolidate and increase rare disease expertise across Newcastle University and the Newcastle Upon Tyne Hospitals NHS Foundation Trust
• To explore the status quo for several key topics and propose actions to address current challenges
• To help build a broader engagement and outreach strategy, especially with patients and patient representatives.

The session will consist of brief presentations, panel discussions, and broader all-group discussions, focusing on two main topics:

• How can we leverage the current policy landscape (at local, regional, national and international levels) to bring benefits to patients?
• How do we use the lessons of the pandemic to ‘build back better’ for RD? What does the future of care and clinical research look like?

Register to attend