Estimated reading time: 5 minutes

World Orphan Drug Congress Europe has become a mainstay event in the RARE Rev calendar. A more intimate cousin to the huge WODC US event, which personally I prefer, this year it was in a new home—Amsterdam

As industry events go, WODC does make an effort to include advocacy and patient groups with a limited number of free booths, tickets and speaker opportunities. That said I do think more should be done to make sure advocacy booths are more central. I also feel there is a terrific opportunity that all conference organisers miss in providing some kind of give back fund where some of their sponsorship revenues help fund expenses for patient and advocacy speakers and delegates. Well you have to dream big right?!

This year RARE Revolution had a small booth, which I love, as it’s an opportunity to show off some of our amazing front covers and gives us a visible home during the event. The downside is you don’t get a chance to attend the sessions. With three days and multiple tracks there is a wide and varied number of workshops, presentations, panel discussions, poster exhibits and pitch sessions to attend.

But for me, it’s outside of the carefully scripted sessions where the real value lies. The word on the street.

So, what was the conversation behind the stages at WODC Europe?

Advocacy Landscape

There were two notable themes arising from advocacy and patient groups;

The funding landscape is dire and for small organisations, of which most of the rare disease sector is made up of, it may be catastrophic. Almost every organisation we spoke with said funds were a considerable problem with grant funding drying up due to increased demand, and community fundraising at an all-time low. What was apparent was those organisations with no industry interest were finding it the hardest of all. The reality is, whilst pharma and biotech talk of patients first, budgets are still tied to business strategy. Which means for any disease area where there is no, or very little, commercial drug development happening this is not a funding root.

A slight shift in the conversations advocates are driving was the other notable change. Whilst lived experience is rightly always high on the agenda, this year more advocates wanted to drive conversations like best practice in lobbying, a new model for rare disease finance, funding and running clinical trials and publishing bias. This shows a real agency that tells us the community are disillusioned with the way things are being done, that industry aren’t quite putting their money where their mouth is, and so they are looking to yet again, take on more to drive benefit for their communities.

Emerging markets

When it comes to unmet need there is no doubt that geography plays a huge role in outcomes and experiences for people living with a rare disease and so it was really heartening to hear people talking more about opportunities outside of the US, UK and Western Europe. China, Turkey, the MENA region and Georgia all repeatedly came up as opportunities.

Clinical trials

Clinical trial design has long been a source of conversation, which was also echoed in some of the sessions, but, outside of the presentations, finding clinical trials was more of a theme. As rare disease drug development increases so do the number of clinical trials and both those in industry and advocacy talked of the frustration of the current very fragmented nature in which clinical trials are listed. Education around clinical trials also came up as a gap and again frustration from the advocacy community that when materials are produced companies host them on their own website which are not where patients and caregivers are.

An opportunity for connection

The value of conferences such as WODC for me lies in the opportunities for in person connection. A sentiment shared by many we spoke to. To meet people you might not otherwise have a chance to and build trust and connection with those you already know. I value the opportunity to really listen to our diverse eco-system so that, as a publishing company, we can make sure all voices and the real stories are shared.

Thank you to everyone who came by our stand, booked meetings and took the time to both find out more about our mission but also share with us their very real challenges, hopes, progresses, innovation and insights. We are looking forward to sharing some of these voices with you in the coming weeks and months so stay tuned!

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