Written by Gavin Jones on Monday 18th May 2020
This was my first fully virtual congress and it must go down as a success – a fantastic well done to the teams at EURORDIS and ORPHANET who turned this around in a matter of weeks. I will attempt to briefly summarise two days of congress within the six different streams. This brevity will inevitably mean I miss things but hope this provides a flavour of this multi-stakeholder collaboration across the rare disease community.
One of the key reasons I attend this particular congress is it effectively drags me out of my industry bubble to better understand the viewpoints of patient groups, health systems and payers. There are always some impactful statements and I start and finish this piece with thoughts from the patient advocacy community:
Rebecca Skarberg, Oslo University, gave a strong message and described the patient voice as a growling roar which I thought was a brilliant description of the community’s potential strength of voice and how it needs to cohesively come together to drive change and better outcomes.
Rare Foresight 2030
This major initiative was woven through the whole of the congress. Its foundation is based on different models to achieve better access to care and innovation for rare disease patients. There is a link to a short video that very effectively explains the initiative and the various scenarios: https://www.youtube.com/watch?v=WBvsj9E0U-g
I am interested to consider how industry, and its commercial model, can fit into these scenarios and play its part in leading to faster and more equitable access.
I have attempted to summarise two days of discussion and debate, across six themes, into a couple of lines so bear with me! I have included drawings created by an artist as the congress progressed to help illustrate the themes – thank you to the congress organisers for creating these.
Theme 1 take home messages:
Theme 2 take home messages:
Theme 3 take home messages:
Theme 4 take homes messages:
Theme 5 take home messages:
Theme 6 take home messages:
So a productive and useful congress in the virtual world we currently live in. There were a few technical issues (we will always be at the mercy of individual broadband speeds) but very well organised and run by a committed team. The opportunities to network were a bit limited and grabbing an informal coffee with people was sorely missed.
Finally closing on another message from the patient community. Jana Popova, European Patient’s Forum, described how patients have so much to offer and have the right and duty to contribute. I challenge myself, the teams at OPEN Health, our clients and other agencies to play their part in enabling this to be the ‘new normal’.
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