European action to support people with rare diseases

It was a privilege to be invited to present at the 'European Action to Support People with Rare Diseases' seminar this week, speaking to Members of the European Parliament, Commissioners and policy makers. The overall theme was 'Enhanced collaboration in the time of COVID-19', and we presented alongside Saskya Angevare from the Netherlands about the patient perspective. We focussed on people's journey with juvenile idiopathic arthritis (JIA) and other rheumatic, autoimmune and autoinflammatory conditions - starting with life before a diagnosis, though to the diagnosis process, treatment, and looking ahead to the long-term and future. We used the opportunity to speak about delays in diagnosis and the impact that has on children, families and society.

We also highlighted some of the impacts that the COVID-19 pandemic has had on patients, based on the COVID-19 European Patient Registry. The impact, of course, is much broader than a diagnosis of COVID-19 - delays in diagnosis, cancelled appointments, difficulty accessing treatment, and anxiety about the future are all problems patients have reported through our study.

Yet despite all the struggles and challenges that the pandemic has brought, we have also seen positive changes in how healthcare is delivered. Many hospitals were forced to move to telemedicine, and whilst it cannot be used for every appointment, using it where appropriate can save a lot of travel time and disruption to 'normal' life.

We concluded with 7 recommendations for moving forwards - from raising awareness, to increasing access to medications, learning from the rapid development of telemedicine, through to improved data-sharing work and working closely with patient organisations through ENCA. ENCA is the European Network for Childhood Arthritis, the umbrella body supporting patient organisations, of which we are proud to be a member organisation.

Earlier this year, Juvenile Arthritis Research founder, Richard Beesley, was invited to join the Board of ENCA. As a board member he is helping represent the needs of patients at an international level.

We look forward to continuing to work with colleagues internationally to make life better for patients with JIA.