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Every two years EURORDIS (Rare Diseases Europe) hold a large international conference focused on rare disease patient advocacy called The European Conference on Rare Diseases (ECRD for short). It is an event we have all being building up to for months, as it brings together patient advocates from across the world, alongside researchers, clinicians and industry, all aiming to drive the rare disease agenda forward and influence rare disease policy. With the advent of covid-19 and the lockdown of Europe, the conference was under threat, but thanks to a huge effort from the EURORDIS team, the event went digital. On the 14th and 15th May over 1500 people from around the world logged on to the ECRD platform for a unique virtual rare disease experience.

Upon entrance to the site we were greeted by a virtual conference centre and options to attend talks, networking, exhibits, and posters – the entire conference experience on a laptop. The sessions covered topics as important as digital health, gene therapies, diagnostics, treatment development, and patient engagement, with leading experts from across Europe sharing their perspectives. There was a real focus on both the vision for rare disease patients in Europe by 2030 – a major focus for EURORDIS right now – as well as the impact of covid-19 on our community. It was also great to see some Findacure friends featuring prominently at the event, with Lucy McKay of Medics 4 Rare Diseases speaking and chairing a session, and The AKU Society producing the winning poster from the event and delivering a great plenary talk on their work (with our co-founder Nick accompanied by a great new lockdown beard). We also had our own poster on display, summarising the work of our patient empowerment programme to those patient groups across the UK and Europe who may not have heard of us (poster 235 of theme 7) – check it out here.

The very fact that this conference was able to go forward in any form at all given the timelines that EUORDIS faced is a true triumph. To have developed a bespoke platform, briefed and managed so many diverse speakers, and delivered the programme in a sensible and accessible format is something that few would have thought possible in as recently as March. The event also featured a number of networking sessions and chat rooms that helped people to connect with one another and share their views on the new covid-rare disease world. This kind of interactivity was a vital edition to the conference, helping people to feel engaged and involved in the event. The virtual nature of the conference also gave people who might never have been able to attend before a chance to do so – people who struggle to travel internationally, access venues, or simply can’t afford the trip were brought into the conference where they never could have attended before.

Having said all this, it would, in my opinion, be wrong to say that fully virtual conferences are the way forward in a non-isolated world. I personally found the lack of face-to-face engagement challenging, and a day of remote talks on my laptops much harder to focus on than the usual conference-fare. Technological challenges had a big impact on a few of the sessions, and the event lacked the immersion and sense of community that I always find so rewarding in our rare disease meetings. None of this should take away from the amazing work and achievement of the EURORDIS team – this online event helped to highlight what is possible for the conference of the future, opening up the event to a much wider audience, allowed access to talks well after the event itself, and pulled down some of the inhibitions people may feel in networking in a face to face setting. I hope that increased digitisation can be used in the future to build accessibility of face to face events, so that we can have the best of both worlds – digital and face-to-face – when supporting the rare disease agenda.

The whole team behind the conference deserve enormous credit – the event showed what the rare disease community can do, and that regardless of lockdown, our need is high, and our voice remains strong.

Europe’s rare community goes digital

by Rick Thompson time to read: 3 min