More common than you think: understanding rare diseases

Impact Review

Focus on: rare diseases Dr Louise Jopling, Commercial Director at Eastern AHSN, explains how we are working to improve the diagnosis and treatment of rare diseases across our region and beyond A . Reducing the diagnostic odyssey for rare disease patients event We have worked with Using patient insight to develop Working with Eastern AHSN to launch the patient insight survey helped capture the experience of those living with rare diseases so we can start to address the everyday issues they face RAREfest Jo Balfour, Managing Director of the Cambridge Rare Disease Network Jo Balfour, Managing Director of the Cambridge Rare Disease Network (CRDN) Because of the coronavirus pandemic, RAREfest20 was hosted online for The funding that Eastern AHSN Because of the small number of people expertise and support in gathering often feel isolated in their experiences. This survey has shown the potential for innovation to support the whole rare It was fascinating to read the survey conditions, as well as a lot of common solutions that can have the biggest impact and improve lives. CAMBRIDGE RARE DISEASE NETWORK opportunity to have a far more inclusive event, which attracted more than 1,000 attendees from 41 countries. People who may not have been able to attend be heard. the patient insight survey helped capture the experiences of those living with rare diseases so we can start to address the everyday issues they face. RAREfest20 had 1,030 attendees from 41 countries Supporting rare disease education for the healthcare workforce More than were at RAREfest20 Elizabeth Morris, Clinical Nurse Specialist at Cambridge University Hospitals NHS Foundation Trust: References Want to know more? If you want to learn more about our work with rare diseases, contact Dr Louise Jopling, Commercial Director at Eastern AHSN, at [email protected] You can learn more about our business priorities on our website.