Our review of the 13th World Orphan Drug Congress Europe

by | Dec 9, 2022 | Blog

From 14-17 November 2022, we attended the 13th World Orphan Drug Congress Europe in Barcelona – Europe’s most exciting orphan drug event!

We were thrilled to not only be a Supporting Partner of the event, but also an exhibitor and speaker!

This year was the first time that three members of our team attended the World Orphan Drug Congress Europe, so learn what it was like for Eve, Hannah and Philippa to attend the largest and most established orphan drugs and rare diseases meeting of its kind across the globe now!

P.S. Philippa even presented at the event and shared her slides below!

“It was a privilege to attend the WODC with the Beacon team this November.

I had some excellent discussions with such a broad spectrum of people from around the globe which really opened my eyes to the exciting developments in the rare/orphan drug space.

So many people engaged with Beacon which was definitely due to the bright and fun appeal of both the stand itself and the team manning it!

It was a particular highlight for me to see so many of the speakers delivering presentations which focused heavily and passionately on patient-centricity in all stages of drug development and research. There’s something inspiring about working towards a shared goal.”

“Last month I attended the World Orphan Drug Congress with other members of the Beacon team. The congress was held in the beautiful city of Sitges close to Barcelona in Spain. It was my first time attending and the experience was enjoyable and worthwhile.

Our colourful exhibition stand attracted a steady stream of visitors which gave us a great opportunity to share the work we do and highlight the importance of patient groups. Alongside manning our booth, I also attended many interesting discussions and presentations on topics including newborn screening, the UN resolution, drug repurposing and AI.

While it was encouraging to see plenty of talks focusing on patient involvement in research, it would have been great to see more patients/patient groups on the agenda. Industry talks on ‘patient centricity’ showed that we are moving in the right direction, however, more action is needed to get to a point where patients are at the heart of research. My fellow Projects Officer Philippa summed this up well in her talk on the last day where she highlighted the importance and power of the patient voice. All in all it was a successful congress!”

“I really loved attending WODC this year. It was my first time jet setting with the Beacon team and also my first time visiting the beautiful Sitges.

It was really interesting to meet different people from across the rare community and felt great that they were also interested and passionate about what we do at Beacon.

I especially enjoyed attending the roundtable discussions, as it was the first time I had ever attended one of these more interactive sessions face to face.

On the final day, I gave a talk entitled ‘Patient group collaboration and the work of Beacon’ that focused on the importance of patient group collaboration, fair and equitable partnerships for patient groups and what we do at Beacon to facilitate patient group development. I really enjoyed being able to present to a new audience and formulate an argument and presentation I was really passionate about.”