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Sharon Ashton: Shaping the future of rare disease policy at the ECRD  

abril 2024

Have you ever thought about portals? Doors to a different world. I’m currently listening to the first book in the fantasy novel series, A Court of Thorns and Roses, by Sarah J. Maas. It has transported me into the magical realm of fairies!  

What has this got to do with the 12th European Conference on Rare Diseases & Orphan Products (ECRD 2024), I hear you ponder?

In her excellent book, The Art of Gathering, Priya Parker talks about events as temporary alternative worlds. There is the life we are all living every day and there are temporary worlds you can dip in and out of for short periods of time.  

I see ECRD 2024 as a portal to one of those temporary alternative worlds, one that has been created for you to pass through for two days – on 15 and 16 May – with the precise purpose of sharing and learning, and to bring those learnings back to use in the real world. More about that later.

By opening the doors to the realm of ECRD 2024, you have the unique opportunity to be part of something bigger, to be informed, but also to have a voice and to shape the future of rare disease policy in Europe. If we do this right and make enough noise about it, we too could be trending on social media in May! Harry Potter, Lord of the Rings, Avatar and Fourth Wing, step aside!  

By entering ECRD 2024, you will be able to exchange best practices for achieving and implementing national plans and strategies for rare diseases, and forge the pathway to equitable diagnosis, access to medicines, and highly specialised healthcare. You will also have the opportunity to revolutionise funding strategies for breakthrough therapies in rarer diseases and co-create a mentally healthy toolkit. There is truly something for everyone! All session descriptions, learning objectives and speakers are now online

As if that weren’t enough, EURORDIS – Rare Diseases Europe is responding to your direct feedback and delivering on our promise to the community, to make this the most accessible and sustainable conference yet. Not only are we gathering people together in Brussels, but we are also bringing hundreds of people together online. 

All sessions will offer closed captioning in the following languages: English, Spanish, Italian, French, German, Greek, Czech, Danish, Dutch, Polish, Hungarian, Romanian and Portuguese. We have designed the whole flow of the conference and each session in a way that enables equal participation from both audiences. We have dedicated moderators for our in-person and online participants, we will offer voting on poster pitches, we will run in-person and online poster scavenger hunts and facilitated networking sessions. For the first time ever, we are proposing community-led discussions on topics proposed by YOU. We invite you to already share the topics you want to discuss in small groups (in-person and online) on Day 1 of the conference with us at

Accessibility for people with disabilities is equally as important. In addition to the closed captioning, we are adding an accessibility page to our website for you to be fully informed about the initiatives we are putting in place. We are providing quiet spaces on-site and training all speakers to make their slides and presentations accessible. By putting these – and many more – measures in place, we will make the experience better for ALL participants. 

But ultimately, what is the point? What will the impact, the legacy, of ECRD 2024 be, I hear you scream? 

We recognise that our conference is not a standalone initiative, but rather a crucial element of a continuous, collaborative drive to bring about positive change in the field of rare diseases. It is for this reason that we are linking ECRD 2024 to our #ActRare2024 campaign ahead of the European elections, and giving the opportunity for our conference participants to co-create and co-sign an open letter to the EU Institutions and country leaders. In this open letter, the expectations of our community will be clearly spelled out and conveyed to decision-makers in an unequivocal manner, leaving a solid legacy for the future EU leadership. 

But let’s not leave our fate wholly with policymakers! Every single one of us has the capacity to take action on an individual, local, or community level. During the conference, we will be gathering your own commitments to take your learnings from this temporary alternative world back into the real world!

Will you be joining us on this journey?

Will you be part of the movement? We’re counting on you!

Read the full programme to begin shaping your #ECRD2024 super-natural experience!

Register here and use this special promotional discount code: ECRD2024%15_events to get 15% off! 


For those first timers among you, let’s go back to basics for a moment. What is ECRD? ECRD is a must-attend event for anyone wishing to remain informed and actively engaged in pioneering solutions to improve the lives of people living with a rare disease. It is a biennial event that has been running since 2001. It remains a highly anticipated event on people’s calendars. Central for the rare disease community and vital to shape future policies for rare diseases. It has really become the leading conference in this field in Europe.  

By Sharon Ashton, Open Academy & Events Director, EURORDIS-Rare Disease Europe

Disclaimer: As a Staff Blog, the opinions – including possible policy recommendations – expressed in this article are those of the author and do not necessarily represent the views or opinions of EURORDIS. The publication of this article on the EURORDIS website does not equate to endorsement.